Finally feeling better

As you can see, it's been a while since I last posted. I'm starting to feel more at ease. I didn't realize how bad things had gotten. I adjust to the increase anxiety so easily that it isn't until it's gone that I realize where I've been. The last few months were really bad. It's good to start to feel a little safer, a little less anxious, and a little more in control.

Anyhow, best wishes to everyone in 2009! I hope this is the year of healing for me.

Uterine Inversion

I haven’t advertised my blog. I don’t link to it on any bulletin boards. I don’t include it in my online signatures. I have only told a few people about it, my husband, counselor, and best friend; however, I did set up the tools to see how or if people are finding it. Some of the queries have been sort of interesting, and I thought I’d try to address one today.

I had a partial uterine inversion after my daughter’s birth. According to Baby Center’s website, since I don’t feel like delving into a journal article today, a uterine inversion is defined this way:

Uterine inversion is a potentially life-threatening complication of childbirth that occurs in as many as one in about 2,000 births.

Normally, within about 30 minutes of a vaginal birth, contractions cause the placenta to separate from the wall of the uterus. After it separates, it comes out through the vagina on its own or with the help of the doctor or midwife, who may pull gently on the umbilical cord. (With a c-section, she manually removes the placenta right after delivering the baby.)

Sometimes, a placenta doesn't separate normally. And, in rare cases, attempts to deliver it cause the uterus to literally turn inside out such that the top of the uterus (the funds) comes through the cervix or even completely outside the vagina. This is called a uterine inversion and it's a true obstetric emergency. It can cause serious bleeding and shock, and requires immediate treatment.

So, my uterus didn’t come all the way out through the cervix, it just collapsed on itself. I had a low-lying, anterior placenta. This means that the placenta was below my belly button in the front. Some studies have shown a correlation between cord traction being applied to the umbilical cord and the incidence of inversion. I’ve never really believed that to be true in my situation. The doctor did attempt cord traction, but the umbilical cord tore off the placenta. Given the location of the placenta, I’ve never been able to figure out the physics of how this would cause the uterus to collapse from the funds, top of the uterus. The doctor then tried to manually remove the placenta. At this point in time, he still hadn’t diagnosed the inversion. It wasn’t until much later after I’d gone into shock that they diagnosed the inversion as part of the problem.

I had so many complications, that things sometimes get tangled up in my brain. I’m never really sure which complication or procedure caused the results; however, I was in massive amounts of pain. I was hemorrhaging, and I went into shock. I know the blood loss caused me to become hypertensive, extremely low blood pressure, but I don’t know if that was from the inversion or retained placenta. It was probably a combination of both.

There are several ways they can attempt to correct an inversion. In my situation, the doctor used nitroglycerine to relax the uterine muscle, so that he could put it back in place. After that, they performed the D & C, and used cytotec and pitocin to get my uterus to contract back down to the normal size.

There are some advantages to having this happen. I really didn’t have any blood clots because the doctor had done such a good job scraping out my uterus. I only bled for about a week, and then had discolored discharge for an additional couple of weeks. I couldn’t go without using personal hygiene products, but it was much less than I’ve heard some women discuss.

Unfortunately, there are some disadvantages as well. Obviously, since I was in surgery I missed out on the first hours of my daughter’s life. I needed blood transfusions. I had a difficult recovery. I ended up with PTSD because of my feelings of helplessness. I was incredibly weak from the blood loss. Just carrying my daughter upstairs to her room exhausted me. I’m also at risk of this happening again in any future pregnancies. The odds of having another placenta accreta / retained placenta are very high due to the D & C they performed. Because I’ve already had one partial uterine inversion, the risks for that are increased as well.

Giving up my Power?

I was reading a Birth Trauma forum the other day, and the question posed to their site was, “When did you give up your power?” There were some interesting answers. Some women said they gave it up in their childhood. Some said the medical establishment slowly eroded it. Some women blamed their spouses for not agreeing with or supporting their vision of their birth.

Personally, I’m struggling with the question. I think there’s a bit of shame associated with it. It blames the woman by assuming that “she gave up her power”, like it’s always in our ability to have a great birth experience. That no one else or nothing else can violate us if “we just don’t give up our power”. I don’t see choosing to see an OB or choosing to see a midwife is “giving up our power”. I don’t see choosing a hospital or choosing a homebirth is “giving up our power”. You don’t automatically lose your power by making a choice.

I don’t think that’s the way they mean the question. I think they’re assuming that the women responding had typical, uncomplicated pregnancies. They’re assuming that there are no complications that can or should be taken into consideration when making the decision.

However, complications, while sometimes over-diagnosed, can be real. There are times, not all the time, when having your child in the hospital is the safest place for mom to be. There are times when having a birth attendant is the safest situation to be in for both mom and baby.

I have to say the question’s been bugging me. You see, I don’t think I gave up my power by choosing an OB. I didn’t give up my power by choosing to listen to him when complications arose. I didn’t give up my power by choosing to have my baby in a hospital. I didn’t give up my power by choosing an epidural. Let’s face it, I argued myself into an epidural despite the anesthesiologist’s objections to providing it. The doctor stole my power when he chose to perform a procedure without my consent. I didn’t give it up, it was STOLEN.

There’s a huge difference between those two concepts. I have to admit that I didn’t fight to get it back during the remainder of my stay, but that was my choice. I chose to focus on healing. I chose to focus on getting out of that hospital as soon as I could. I chose to focus on me. I didn’t want anything to get in my way, but there again; I guess that is taking back my power. It was my choice; therefore, the power was mine. I didn’t fight for answers; I chose to save my energy to fight for healing.

Maybe having a choice is having the power. Except for the procedures after my daughter was born, I made the choices. They might not popular in the home birthing community, but they were my choices.

Am I an advocate or a wimp?

So, I feel like I wimped out by choosing to not speak to the doctors tomorrow. I know that it's not so much a matter of wimping out, so much as it's a matter of choosing to focus on fixing myself. However, I tend to use negative phrases or comments to describe myself instead of positive ones, so it's easier for me to say I wimped out.

My counselor told me that I'm becoming an advocate because I chose to provide my doctor with my writings instead of just cancelling. I'm not sure how I feel about that. I don't want to be an advocate. I don't want to be an activist. I just don't want anyone else to feel the way that I do right now. I don't want another woman to feel like she's powerless. I don't want another woman to feel like she's been coerced into procedures that she doesn't want. I don't want another woman to feel as isolated as I do. I don't want another woman to feel like she has no one to talk to, or no one who understands her. I don't want another woman to feel like the nurses are re-traumatizing her by their dismissive attitude. I don't want another woman to believe that she's worthless, like she's a vessel, like she's nothing. It's a horrible feeling to know that no one believes you count for anything.

I'm tempted to show up at the hospital tomorrow even though they're not expecting me. I'm tempted to see if I can make it through the discussion without breaking down. I don't know. I know that it would be incredibly hard for me to be strong enough in my beliefs that I don't feel like I'm being judged as worthless, ignorant, or unreasonable in my expectations.

In 37 years, I've learned that problems don't go away by themselves. Ignoring a problem won't make it go away. Not talking about a problem doesn't get it resolved. There's a problem in our maternity system. When 10% of women test positive for PTSD after their children's birth there's a systemic problem with the maternity care in the US.

I don't know how we fix it. If there's anyone that understands that complications can be real, that some women need more care or interventions than others, it's me. I know that homebirths aren't the answer to the problem. I know turning care over to midwives isn't the answer to the problem. I know that birth abuse can happen at home, in the hospital, or in a freestanding birth center. I know that midwives, doulas, and doctors can all be perpetrators. I guess that's why I cringe at being called an activist / advocate. Too many people see the solution as being so simple as making homebirths the norm, or midwives the norm.

Maybe it's a simple as making sure that doctors, nurses, midwives, and doulas are making the decision to provide patient centered care. Maybe if we had a more open dialogue between caregivers and their patients on their childbirth philosophies we'd have better outcomes. Maybe if caregivers were more open about how they really practice their craft patients would be able to find a caregiver that provides them with the type of care they desire. Instead we get blind-sided. The on-call caregiver delivers your baby instead of the person you've developed a relationship with. We get stuck with a nurse who's having a bad night, and doesn't want to be at work, so she takes it out on her patient.

It's so hard to make the right choices. No matter what we choose, someone says we're being too inflexible. We're taking risks by having the baby at home. We're taking risks by having the baby in a hospital. We're taking risks by breastfeeding, or we're taking risks by formula feeding. It's enough to make your head spin. Why don't we support each other instead of questioning each other? Why don't we bond together as a team instead of looking for the saboteur?

Advocate or wimp? I don't know. I know I won't let this drop.

I'm Thankful for:

I thought I should try to write something a little bit more upbeat, and with Thanksgiving last week, I thought I could write about the things that I’m thankful for from the night of my daughter’s birth.

1. My doctor was well-trained, competent, and he kept it together until help arrived.
2. My daughter is healthy.
3. I still have all of my parts.
4. The nurses let me stay in bed until I was ready to get up.
5. Someone took the time to donate blood, and it was available for me when I needed it.
6. I could focus on healing myself because no one expected me to room in with my daughter, and the nursery staff was great.
7. My husband took the first week off work, and he drove me around town whenever I wanted to go out which was heavenly after being on bedrest for 4 weeks.
8. My best friend was there to give my daughter all of the love and affection she deserved while my husband and I were tied up with my complications.
9. My husband's best friend for coming to the hospital in the middle of the night to help my husband make decisions, and let him go home to get some sleep.
10. My health insurance that pays for the counseling sessions that have helped me learn to live with the resulting PTSD.

Wow, that was more than I expected, and easier that I thought it would be. I guess there were some good things that happened that day, it’s just hard to remember them.

Getting Better

Since cancelling my meeting last week, I've started feeling a bit lighter. I'm finding myself being less annoyed with everyone. I'm less edgy. I'm still not sleeping well, but the actual sleep I'm getting is better.

I'm still struggling with anger. I'm angry with myself. I'm angry with the old doctor. I'm angry with the nurse. I'm angry with my new doctor for dredging this up.

My counselor suggested that I sometimes feel like I'm crazy. She might be right. Maybe that's why I'm fighting this so hard instead of submitting to it. Someone once told me that there's great power in submission, but I struggle with that concept. I guess to me, fighting is ingrained. I don't like to give up. I don't like to quit. I'm used to making things happen, but I can't make the PTSD go away.

I keep going over the letter I wrote in my head. It's like a loop that keeps replaying. I know that it's not the most graphic representation / version of my daughter's birth, but it's a pretty strong description. There's no hiding the pain, fear, or anger from the reader. I'm not sure if I'm okay about the new doctor letting other people read it. I know that hiding from this doesn't help. I know that I NEED to talk about it. I'm not quite sure I'm ready to face the censure, judgement, and scrutiny. Up until now, I've really only discussed it in "safe" places. I don't open myself up to the judgement often, and if I pick up a negative vibe from someone I don't bring it up again. I'm still trying to find a way to discuss it while protecting myself.

Maybe I need to re-write the story.

I just want to feel like the "old" me again. I don't like the new Traumatized Mom.

Meeting w/ Hospital Cancelled

So, I'm cancelling the meeting with the hospital. I met with my counselor yesterday, and she noticed that my PTSD is nasty bad again. We started trying to track it back to the trigger, and I realized that I've been spiraling out of control since my doctor asked me to talk to the hospital. The easiest solution to getting myself feeling better is to cancel the appointment.

However, I don't want to ignore the request. Therefore, I typed up a copy of my birth plan, and wrote down my reasons for why I included each line. It was hard to do, but I feel much better now. Some of the items are really difficult to admit.

Here's a copy below.

Hi, I’m Traumatized Mom, and I’m writing this to explain how communication could have made my daughter’s birth a better experience. I developed PTSD that night, and I’ve been struggling with it for 18 months. I know it sounds weird to say that childbirth, a normal physiological event for most women, caused PTSD. After all, I wasn’t a victim of the I-35 bridge collapse or a soldier returning from duty in Iraq, but PTSD can occur during any event where the person experiencing it feels out of control and like their life is at risk. The National Center for PTSD defines it like this:

Posttraumatic Stress Disorder (PTSD) is an anxiety disorder that can occur after you have been through a traumatic event. A traumatic event is something horrible and scary that you see or that happens to you. During this type of event, you think that your life or others' lives are in danger. You may feel afraid or feel that you have no control over what is happening.

So, how does my situation fit the criteria for PTSD? I experienced a lot of complications after my daughter’s birth. I had a PPH, placenta accreta, and partial uterine inversion. My daughter’s birth was induced for PIH, but after her birth, I became hypotensive. I was in massive amounts of pain. I didn’t understand what was happening, or why. I felt like I had no control over what was happening within my body or to my body by the medical staff. I was thought I was dying. I thought I was going to abandon my new baby girl. I never expected to wake up the next day.

The effects of that night have rippled throughout my life. I’m now scared to go to the doctor. I do it, but I have nightmares for a week or so leading up to a well-baby checkup or annual physical. I struggle with flashbacks every time I give my daughter a bath. I’ve struggled with finding a new form of birth control since that night. Condoms give me flashbacks, and I can’t stand the thought of putting anything like a diaphram or IUD inside of myself. I also have to watch out for things that can trigger my temper. Something as simple as a co-worker not listening to me can send me into a rage. It sends me back to the hospital room where I felt like I was not listened to, dismissed, or ignored.

The PTSD drives me to do things that some people would consider a little screwed up. Before my annual physical this year, I was driven by this demon to write out what I called a “birth plan” even though I’m not pregnant or planning to become pregnant in the future.

So, please let me explain to you why I wrote what I did.

Introduction:

This isn’t the typical birth plan. I know that things can go wrong very quickly. I don’t care about IVs, pitocin, dim lights, or vaginal exams. I expect that I’ll be trapped in the bed by a multitude of cords coming out of nearly every orifice. I expect that things will go crazy wrong, all hell will break loose, locusts will descend upon the earth, and the plague will rage throughout the land.

I don’t know if any of you have had the opportunity to see a birth plan recently. Most of them harp on not wanting an IV, wanting the lights to be dimmed, not wanting vaginal exams unless requested, and believing that pitocin is evil. Those are the least of my worries if I have another child. Those things to me are minor inconveniences. Is it fun to be tethered to the bed, no, but I know that I’d do anything to have a healthy baby. So, if my blood pressure is skyrocketing, and lying on my left side lowers it, I’ll do it. If having an epidural reduces my blood pressure to a point that the doctors are comfortable letting me continue working towards a vaginal delivery instead of being shipped off for a c-section, no problem. Vaginal exams are not a big deal as long as they ask before doing them. As for the rest, well after the last birth, I have no expectation that things will go well. I know I’ll be waiting for the shoe to fall. Keeping me calm and in the “labor zone” will be the only goal. Everything else is easily ignored.

Item number 1:

Please talk to me constantly, especially when I can’t see what you are doing.

This is because of the PTSD. Information and education reduce anxiety. I cope with medical procedures much better when I know what’s happening, when people are talking to me, and when I understand why things are being done. I would prefer to have the noisiest room in the hospital – not because I’m screaming or yelling, but simply because I don’t want peace and quiet. Talking, information, and education calm me.

Item number 2:

Please follow this protocol when explaining interventions to me because I may not ask the appropriate questions.

Get my attention! Call me by name, grab my hand, look into my eyes, and talk to my face - not my cervix or anyone else in the room.

Why do you want to intervene?
What intervention do you want to implement?
Are there any long-lasting side effects or consequences of this intervention?
Write it down for me before you discharge me from the hospital.

When things were going wrong, I retreated into myself. I focused on what was happening inside of me. I focused on the pain. Nothing got through to me unless it was an emotionally charged statement like, “where the hell are they”, or “what took so long”. Things spoken in a calm manner didn’t register, so getting my attention was essential to understanding what’s happening. For me, the pain I experienced after my daughter was born was 1,000 times worse than the pain of labor. I described it to a friend this way:

The pain is all consuming. You can't think. You can't breathe. You can't hear what they're saying. You can't process what's happening. It wraps around you smothering you in a cloud of darkness and fear because you know it's not supposed to be like THIS. You can't form the words to question what's happening. You're sucked down into the black void of semi-consciousness not caring what they're doing to you because all you can focus on is the pain. It's the only thing that exists. They're pricking you with needles, people come running in and out, and someone straps a mask over your face. You feel the doctor's hand shoved all the way inside you. How the heck did it get there? The pain sucks you away. You struggle to breathe and continue to fight. Try to breathe through it, but you can't ride the waves. It's consuming your body. Don't quit. Don't abandon the baby. Keep fighting. Some comments break through. You can hear the anger and fear in the doctor's voice, and it scares you even more. But you're sucked back down into the depths of hell wondering what's happening. You feel the bed being wheeled down the hall. You sense the bright lights of the operating room beaming down on your eyelids, but the pain pulls seductively at you. Just give up. Stop fighting. Surrender to your death. Abandon your baby. Just let go. And then the anesthesia sucks all your thoughts away.

That’s a lot to overcome when you’re trying to get a patient to understand what’s happening and be a participant in their own care. I’ve been told that the doctor did a “really good job” of explaining what was happening, but I was already sucked into this hell.

My husband didn’t get it either. He was watching the doctor. He remembers the doctor having a slightly puzzled look on his face, but then he did a little fiddling. He remembers the expression changing to a more this isn’t quite right look, and then he did a little more fiddling. Finally, he remembers the “oh, shit, I’m fucked” look on the doctor’s face. My husband checked out then. Once he realized that it was all falling apart, he wasn’t listening. He was too scared.

The other reason for this being included is after I got out of surgery, and recovery, and I tried to ask about what had happened, I only got ½ answers. The first answer I received, was that “I had a lot of bleeding”. As you can see by the list at the beginning of this document, a whole lot more went wrong than a lot of bleeding. Everyone made the assumption that I had understood in the delivery room what had happened, and I never really got a full explanation until my 6 week post-partum appointment when I was more capable of asking questions. Even then, I didn’t know that surgery itself was called a D & C until I interviewed a new doctor 6 months later. Also, no one ever used the clinical diagnostic names with me. I was told my uterus turned inside out, the placenta was stuck, and my blood pressure crashed. This information was inadequate when it came to researching the complications after I got home. I didn’t know if the search results were returning the correct information or not. So, here again, information and education reduce anxiety. The more information that the patient has available, the less anxious they should feel.

Good communication requires that one person is listening or receiving the information that the other person is trying to give them. The message that the doctor tried to send couldn’t get through the fear, anger, or pain that we were experiencing. You have to pull the patient out of that mode for them to understand what’s happening.

Item number 3:

If there is any disagreement between caregivers over what treatment option is appropriate, please work it out between yourselves. I don’t wish to take sides, or argue with either of you. If there is a legitimate choice for me to make, please present me with both options in a non-confrontational manner, and allow me a few moments to reflect upon my options prior to making a decision.

When the anesthesiologist came in to perform the epidural, I made the mistake of telling him that the doctor wanted the epidural to decrease my blood pressure. The anesthesiologist felt very strongly that epidurals should only be used for pain relief, and he argued with me about whether I should or shouldn’t be given the epidural. From my standpoint, I knew that having a vaginal delivery was at risk. From moments after I showed up for the induction, we’d been trying to bring down my blood pressure. We tried different positions, and, without my knowledge, they’d tried IV blood pressure medication. I knew that if it didn’t level off, that I could be headed for the operating room. As far as I was concerned, I’d need the epidural if I got forced into the c-section, so why not try it for the blood pressure? The last thing my blood pressure needed was an argument over whether I was in pain or not. I was in labor. Last time I checked, labor is painful, so it seemed ridiculous to be arguing over this issue. Also, I’d never seen the anesthesiologist before this time. I didn’t know if he knew “my” medical history, if he’d seen the blood pressure readings, or if he knew that they’d already tried IV blood pressure medication. It seemed like he was not in the best position to be making decisions about what treatment methods I should be following. The last thing I needed was more stress / anxiety in that delivery room. There was enough stress in being induced for complications instead of having the spontaneous, un-medicated vaginal delivery I desired.

Item number 4:

If I tell you that something isn’t right or isn’t working, please believe me instead of dismissing my comment as a fallacy because I’m not acting the way YOU believe I should be acting to make that comment a truth.

Towards the end of my labor, I told the nurse that I didn’t think the epidural was working properly. She responded in a very snotty manner that, “epidurals don’t take away ALL of the pain”. First off, I didn’t want her to do anything with this information other than mention it to the doctor. I was handling it not working. I didn’t need her to go find the anesthesiologist, and have him fix it. I just wanted the information passed up the chain of command. Second, everyone deals with pain in different ways. For me, I was focused and breathing through the contractions. I didn’t yell, scream, curse, etc. I was in control. My best friend was there to support me, and she told me that I was boring because I didn’t need her to do anything to help me cope. I was self-sufficient. This became incredibly important later. I know there’s no way anyone could have predicted the way things happened, but the doctor made the choice to try manually removing the placenta without telling me because he believed I was anesthetized. Please reference my description of pain under item number 2

Item number 5:

Please tell me the name of every medication that you are giving me whether it is given orally or through an IV at the time you administer it, and write it down for me before I am discharged.

Here again, I had no clue what was being pumped into my body. When my daughter was born, I had one IV. When I woke up, I had 7 or 8 IV’s. I knew something wasn’t right. But, I couldn’t formulate the questions. I had no clue what was running through the IV’s it was so odd to me that each time they brought me a medication to be taken orally, they told me exactly what it was, but no one ever told me what I was hooked up to. The only things I knew about were the pitocin for the induction and the blood transfusions. So, here again, information and education reduce anxiety. The more information that the patient has available, the less anxious they should feel.

Procedures:

My uterus has a history of flipping inside out, so please don’t pull on the umbilical cord.
I only consent to manually removing the placenta if I’m fully anesthetized. Please verify this with me prior to proceeding with the procedure.
If I’m hemorrhaging, have another accreta, and my uterus has inverted again, then don’t take extreme measures to save my uterus. I won’t be using it again.

Well, I did term this a birth plan, so adding a few things that are really specific to my desires / experiences seemed appropriate.

Suggestions:

After my experience, I do have a few suggestions for how you can improve your patients’ experiences.

I have problems dealing with the level of violation I feel about the attempted manual removal of the placenta being performed without my knowledge or consent. I know in my head that this was a medical procedure, but my body and my heart don’t believe that to be a truth. To me, this was a procedure that shouldn’t be covered under the blanket consent form everyone signs upon admission. I can understand that there wasn’t time to go dig a form out of a cabinet, but I do think that it should require specific verbal consent from the patient.

I’d like to see you create a support group for moms with post-natal mood disorders like PPD, PTSD, PPA, etc. I know that I’m not the only mom who has walked out of your hospital feeling isolated. New moms are isolated enough without having mental health issues that isolate them even more.

I’d like to see you start giving patients an opportunity to de-brief from their experience. They say that this de-briefing can help patients assimilate their experiences more effectively than by trying to handle it themselves. This would also allow the patients to have their feelings validated.

I’d like to see some training offered to the doctors, nurses, and other caregivers on the maternity floor on how to handle moms with traumatic births. One of the things I found difficult was having everyone tell me that this was “normal”. I’ve visited dozens of friends after their babies were born. I knew it wasn’t normal to not care that the baby was in the nursery. I knew it wasn’t normal to still be hooked up to machines. I knew it wasn’t normal to be sleeping with those goofy massaging socks / leg warmers. These women need their feelings to be validated. They need to be told its okay to be sad, angry, or disappointed. They don’t need to here, “all that matters is a healthy baby”, “at least you had a healthy baby”, or “you’ll change your mind in a year”. They need to know that their experience was difficult.

Don’t avoid the hard questions. I was so angry that I didn’t get real answers that I wanted to sue the hospital / doctor. Ignoring the questions isn’t going to get a patient to not file a lawsuit, but giving them answers and apologizing for things that shouldn’t have happened might. As for why I didn’t sue, I re-live this event every day. I still can’t bring myself to discuss it without tears. I blame myself for choosing a caregiver that didn’t treat me respectfully, and I’m ashamed that I can’t get past this. I didn’t want to sit on the stand, and bare myself to the world. It’s hard enough to live with this every day.

“It is often easier to ask for forgiveness than to ask for permission.” Grace Murray Hopper

That quote makes me crazy. It’s what happened the night my daughter was born. People, well doctors really, seem to think that they don’t need to ask for permission. They seem to think that once you’re in their place / hospital / care / etc. that they can take charge and do what ever they wish. Once you’re on their turf, the game is over, the power is stolen. A birthing woman is less than nothing. She’s an incubator. Her wishes can be ignored or over-ruled if she’s even given the opportunity to participate in her own care.

I need to add a comment about this quote to my birth plan. It’s fundamental to why I was so traumatized. There was so much rationalization on the doctor’s hand that night. “She had an epidural, she’ll never feel it”, “I’m the doctor, and I know what’s best”, or my favorite, “it’s just a medical procedure” to having a hand shoved elbow deep in your uterus with no communication. It sure didn’t feel like a medical procedure to me. I didn’t grant permission. I didn’t say, “yes. Go ahead”. I didn’t say, “I understand the placenta is stuck, and you need to try to get it out”. I wasn’t given the option to say yes or no. Permission? What’s that? Those consent forms cover it, right? Yep, just like a marriage certificate guarantees that my husband can have sex anytime he wants. I wonder what my doctor will think about the addition?

Here’s my revised birth plan:

This isn’t the typical birth plan. I know that things can go wrong very quickly. I don’t care about IVs, pitocin, dim lights, or vaginal exams. I expect that I’ll be trapped in the bed by a multitude of cords coming out of nearly every orifice. I expect that things will go wrong, all hell will break loose, locusts will descend upon the earth, and the plague will rage throughout the land.

However, I would like this experience to be better than my last birth.

Communication

Please talk to me constantly, especially when I can’t see what you are doing.

Please follow this protocol when explaining interventions to me because I may not ask the appropriate questions.

• Get my attention! Call me by name, grab my hand, look into my eyes, and talk to my face - not my cervix or anyone else in the room.
• Why do you want to intervene?
• What intervention do you want to implement?
• Are there any long-lasting side effects or consequences of this intervention?

While, “it is often easier to ask for forgiveness than to ask for permission”, it is not the right choice to make when it comes to breaching my reproductive organs. Ask before placing anything inside / through my cervix, hands, electrodes, amniohooks, etc.

If there is any disagreement between caregivers over what treatment option is appropriate, please work it out between yourselves. I don’t wish to take sides, or argue with either of you. If there is a legitimate choice for me to make, please present me with both options in a non-confrontational manner, and allow me a few moments to reflect upon my options prior to making a decision.

If I tell you that something isn’t right or isn’t working, please believe me instead of dismissing my comment as a fallacy because I’m not acting the way YOU believe I should be acting to make that comment a truth.

Please tell me the name of every medication that you are giving me whether it is given orally or through an IV at the time you administer it, and write it down for me before I am discharged.
Please write down any complications you diagnose prior to my discharge, so that I can research them after I get home if I have any questions about them.

Procedures

My uterus has a history of flipping inside out, so please don’t pull on the umbilical cord.

I only consent to manually removing the placenta if I’m fully anesthetized. Please verify this with me prior to proceeding with the procedure.

If I’m hemorrhaging, have another accreta, and my uterus has inverted again, then don’t take extreme measures to save my uterus. I won’t be using it again.

Meeting at the Hospital

December 4, 2008 at 7:30 am I meet with the doctors at the hospital to discuss communication. I think it will be good to get this behind me. My doctor has asked me to talk about the "birth plan" I wrote before my annual physical this year. It ended up being a pretty atypical plan. I'm not sure if I'll print copies off, or do a powerpoint presentation.

I guess I need to think about it more.

NIGHTMARES - Continued

So, that helped. Admitting that I'm stressed. Recognizing the anxiety. I slept okay most of the night.

I'm still nervous about this appointment. I don't want to go. I don't want to admit that we have a problem I can't figure out. However, I will go. I will be strong. I will advocate for my child.

If I run into the other doctor, so be it. I have choices. I can walk away. I can ignore him. I can give him a piece of my mind. I can scream at him. I can be strong.

I'm not the same person I was when my daughter was born. Yes, some things have changed for the worse. I'm more on edge. I have to be careful of my temper. I have to be alert to triggers. However, I've gained some things too. I know I'm stronger than I believed. I know that I won't give up. I know I won't quit, and I know that I can be a good advocate. I know that communication is essential to me, and I can find doctors that respect that choice.

NIGHTMARES!!!!!

ARGGGGH!!!!

The nightmares just keep coming. At times there is a long enough gap between them that I forget about what they're like, but like a bad penny, they keep showing up. My daughter's 18 month well baby check is coming up. I know this is what is triggering them this week. Her doctor works out of the same clinic and the same set of waiting rooms that my former OB utilizes. I know that I'm more on edge this week because I caught a glimpse of him through the check-in window the last time I was there.

I just want to be better. I don't want to be haunted. I want my dreams to be safe again.

Passing information / educating patients?

This is my response to a nurse's blog post:

This is a very touchy subject for me, and I appreciate you blogging about it. I didn't write a birth plan for my daughter's birth. I had gestational diabetes, and I was being induced for PIH. I knew that what I wanted, an unmedicated birth, wasn't a possibility. I accepted that I was going to have an IV. I knew I was going to have the blood pressure monitor strapped around my arm and the fetal monitors around my belly. I knew that it would be nigh onto impossible to move around. With every complication, I knew that my choices were being reduced to the point that I was determined to go with the flow to get this baby out safely.

Where the lack of information / education / understanding about my birth came in was after my daughter was born. Everything fell apart 30 minutes after her birth. I was hemorrhaging, the placenta didn't detach, and my uterus began to flip inside out. I was in so much pain and my body was going haywire from blood loss and a plummeting blood pressure that I couldn't understand what was happening. I couldn't participate in the decision-making process. I didn't understand the explanations my doctor was trying to provide. I knew that they were taking me into surgery, but I didn't know why I was going there or what they were going to do.

The lack of information continued after I was out of recovery. I knew something wasn't right. I had 8 IV's, and I was still in the labor / delivery room. When I asked what was wrong, all they told me initially was that I'd had lost a lot of blood. While this was somewhat true, it wasn't the whole story. I was at the point where I didn’t have the energy to fight for answers, and in all reality, my brain wasn’t producing the right questions to ask. When the doctor came to do rounds, he told me that the placenta came out in 20 pieces, the uterus flipped inside out, and my blood pressure plummeted from 190 / 120 to 50 / 30. However, he did not tell me that he had done a D & C after his attempt to manually remove the placenta failed. He did not tell me that the placenta not detaching was called placenta accreta. He did not tell me that my uterus flipping inside out was called a uterine inversion. He didn’t tell me that I’d lost 50 percent of my blood. He didn’t tell me what was running through the 8 IV’s that were still in my hands. Did he give me an explanation? Yes. Was it complete? No. There was no discussion of the consequences of these actions. Could I have asked? Yes. Should I have asked? Yes. Was I capable of formulating the questions? Not at that time. The trauma had taken too much of a toll on my body, and while I recognized that I wasn’t getting the full story, I wasn’t in an emotional or physical position to fight the battle to find out what had happened. I just wanted to go home. I wanted to lick my wounds in private, and pretend that it had never happened.

It wasn’t until my 6 week postpartum checkup that I found out the clinical diagnosis. At that time, I only found out because I asked if a c-section would have been a better choice than the induction. The doctor definitely wasn’t the one to initiate the conversation. Even then, it wasn’t until I was interviewing a new OB to find out what the risks were of having more children before I found out that my old OB had done a D & C.

I don’t think that my experience was all that unusual from an educational / informational standpoint. I think sometimes that the bare minimum of information is presented to the patient. Just enough information is passed on to keep them from being a pest.

This is a pretty complicated topic. There are a lot of things that are required for women to be educated about birth.

1. They have to want to be educated.

2. The information has to be accessible.

I wanted to be educated. I wanted to know about normal, typical birth. I wasn't into researching complications just to worry myself about them. I wanted to know the basic physiological aspects of childbirth. How your cervix changes to allow the baby to be born. How to handle the pain without drugs. How to move to make it easier for the baby to descend. When complications arose, I did research the specifics of those complications. I knew that high blood pressure presented all kinds of problems. I knew what to watch for as far as signals that it was getting too high. I learned about watching out for pre-term labor symptoms.

The problem was that I didn't end up with a normal typical birth. I don't think there's a single childbirth class that really explains clearly all of the complications I ended up experiencing. I could have done Bradley, Lamaze, or Hypnobabies, but would they really have educated me about having my uterus turn inside out? They talk about complications they consider "preventable", but I don't know that mine really were. If under anesthesia, the placenta comes out in 20 pieces it's pretty darn stuck. It's not just a little bit attached. As for the inversion, is it possible that the attempted cord traction caused this? Yes, but I'll never know for sure if this was directly the fault of that procedure, or if it was simply something that happened spontaneously.

I think too many of these classes assume that everything will happen normally, in which case interventions aren't necessary. The problem is that things don't always happen normally. There are situations where interventions really are necessary. When these classes teach you, don't trust your doctor or midwife, aren't they doing a disservice to the women who truly are at risk? They teach you to obsess over the procedures instead of creating a relationship with your caregiver. When things to wrong, they leave you dangling. You're the screw up. You didn't follow their teachings. You never should have listened to the doctor. They're all out to get you. Their only goal is to get everyone out alive, and on and on and on...

Some childbirth books have sections on complications. Few of them give as much information as I ended searching out once I knew what had happened. Was the information accessible to me? Yes, if I searched medical journal articles and medical school powerpoint presentations. Does that mean the average mom needs to research birth at this level? I certainly hope not. It seems ridiculous to have every woman searching out the most rare pregnancy complications for absolutely no reason. There are enough concerns when you're pregnant without looking for trouble.

I also think that caregivers need to think about their role in educating women. I really think that they need to step up to the plate a little bit in making sure that their patients really understand what happened. Did my doctor's explanation meet that criteria? I didn't know how to look it up or research it, but I did have a pretty good grasp of the complications from a layman's perspective.

It just wasn't enough for me. I needed more.

Birth Rape?

Birth Rape

Isn’t that an ugly term? The first time I heard it, I thought a bunch of radical feminists were making a big deal out of nothing. How can those two words possibly be spoken together? Birth is about innocence. Is there anyone more innocent than a newborn baby? Rape is so ugly, so violent, so brutal. It offended me at the core of my being. However, I think there may be something to it.

Some people believe that birth rape can only occur if a woman has been previously assaulted. They believe that the birth itself isn’t a rape, but that the woman is experiencing a flashback to a prior criminal act. This flashback is so real, that they transfer their feelings about the original assault to the act of giving birth.

This experience impacted me the night my daughter was born:

I’d met this guy six months before that night. At first, I saw him only occasionally, but over time I’d started seeing him once a week. I invited him into my room. After 6 months, I trusted him enough to let him come inside. I was sitting on the bed, and he was sitting in a chair at the foot of the bed while we were talking. All of the sudden, he shoved his hand inside me. I tried to push him away with my legs, but I couldn’t move them. I tried clawing at the sheets to drag my body away from him, but he wouldn’t get his hand out. I was in massive amounts of pain… This couldn’t be happening to me.

Doesn’t this sound like a date rape experience? I trusted this person. I invited them into my personal space. I didn’t give permission for this to happen. I tried to get away. I was violated. I must have had a flashback to this prior crime during my birth if I think birth rape is a valid term.

Now, let me change six words:

I’d met this doctor six months before that night. At first, I saw him only occasionally, but over time I’d started seeing him once a week. I invited him into my room. After 6 months, I trusted him enough to let him come inside. I was sitting on the bed, and he was sitting in a chair at the foot of the hospital bed while we were talking after my daughter’s birth. All of the sudden, he shoved his hand inside me. I tried to push him away with my legs, but I couldn’t move them. I tried clawing at the sheets to drag my body away from him, but he wouldn’t get his hand out. I was in massive amounts of pain… This couldn’t be happening to me.

Does that change you opinion of my experience? Do you believe this behavior is suddenly acceptable? Why is it that behavior that is unacceptable every where else in society suddenly becomes acceptable in a delivery room? Before my daughter was born, I’d never been the victim of a violent crime. I’d always been treated respectfully by the men in my life. No one had ever touched me in an inappropriate manner. This wasn’t a flashback. It’s my reality.

Birth is an incredibly intimate act. It requires you opening parts of yourself that you keep hidden from the world in order for it to happen. It’s deserving of the same respect that women expect when giving themselves to their lover. It’s something to be treasured. If consent is so essential to a healthy sexual experience, consent is also necessary to healthy birthing experience.

It took several months before I admitted that my daughter’s birth had resulted in my birth rape. I didn’t want to admit it had happened. I tried hiding from it. I tried ignoring it. I didn’t report it. I blamed myself for it. But I’ve learned that this doesn’t help, so now I’m talking about it. I’m not sure yet if I’ll discuss this when I meet with the doctors at the hospital, but I’m thinking about it. I know they don’t want to admit that this happens. I know they want to bury their heads in the sand, but someone has to speak out. There was a time when people didn’t believe that one spouse could rape the other, but now we recognize this as a truth. In this time we live in, people believe that a woman in labor cannot be raped, but a time will come when we will believe in this truth also.

PTSD after Childbirth?

I know a lot of people can't understand how a woman can develop PTSD, post-traumatic stress disorder, after giving birth. After all, it's supposed to be one of the best days of your life. It's a day that's supposed to be filled with joy, sunshine, and flowers. The angels in heaven are supposed to rejoice alongside the new family. Most of the time childbirth works that way. It's painful, but the women put it in the past. They might develop PPD, but that usually goes away.

I was so overwhelmed in the first 6 weeks of my daughter's life, that I didn't realize anything was going on emotionally. It was all I could do to get through those first few days and nights. Yes, I was tired, but all new moms are tired. Yes, I was struggling to physically recover, but all new moms struggle with that too. It wasn't until I saw my doctor again for my 6 week postpartum checkup that I realized things weren't quite right.

I got undressed, and laid down on the table for him to do the exam, and I found myself squirming to get away from the doctor. I didn't want him to touch me. I was terrified. I fought myself into submitting to the exam. I stared at my baby girl sitting in the carseat on the other side of the room praying for the exam to be over. He finally finished up, and I sat up on the table. I asked the one question that had been in the back of my mind for the last 6 weeks, "would a c-section have been safer for me?" It opened up the door for a pretty frank discussion about what had happened. I had never heard the terms uterine inversion, retained placenta, postpartum hemorrhage or D & C until then. Can you believe it took 6 weeks to get the clinical names of the complications I had experienced? I took that information home, and started googling the living daylights out of those terms. I read everything I could get my hands on - journal articles, medical school presentations, and any other reference I could find. I was obsessed. My husband would walk in the door, I'd hand him our daughter, and I'd race to the computer to start researching. I went back to work two weeks later, and at every break or over lunch I'd be googling those terms. I was an expert, but I still felt like I didn't really know what had happened. I finally broke down, and requested my medical records.

So 2 1/2 months after my daughter was born, I realized I had to do something about my mental health. My husband was frustrated with what he called my "OCD tendencies". He didn't like the person I was becoming, and I realized that my behaviour was impacting our daughter. I saw my family practice doctor thinking I had PPD, and I did score high enough on the screening test that it could have been the cause. However, when discussing it, he mentioned that it might be PTSD instead. But, it couldn't be PTSD, right? Soldiers in Iraq get PTSD. The I-35 bridge collapse victims developed PTSD. Childbirth is normal. It's a common part of life, so it couldn't be PTSD. I tried anti-anxiety pills, but they didn't help. After a few weeks of my husband pressuring me to do more than take pills, I finally asked for a referral to a mental health professional.

My husband went with me to the first counseling appointment. Imagine my surprise when the counselor begins introducing herself, and tells us that she's married to Dr. XXXX at XXXX clinic. The doctor who delivered our baby. I was so betrayed that my family practice doctor had referred me to someone that was closely related to my former OB. Since I was paying for the visit anyhow at this point, my husband and I gave her the abbreviated version of the story. She confirmed that it was PTSD, and told us that she could help me even though her relationship did bring up questions. After the visit, I made the choice that I would try to find someone else to help me since I knew I'd always have questions in the back of my mind.

It took several weeks to find someone else. I tried the counseling service through my employer, but that was a fiasco. I finally started googling counselors with EMDR experience. I found the new counselor 3 1/2 - 4 months after my daughter's birth. Once again, my husband went to the first visit with me. We told the story, going into a bit more detail this time, and once again I was diagnosed with PTSD.

I struggled with this diagnosis. I just couldn't figure out how it could be correct, so here's the criteria from the National Center for PTSD:

Posttraumatic Stress Disorder (PTSD) is an anxiety disorder that can occur after you have been through a traumatic event. A traumatic event is something horrible and scary that you see or that happens to you. During this type of event, you think that your life or others' lives are in danger. You may feel afraid or feel that you have no control over what is happening.

So, how does this apply to me? I was absolutely terrified that night. I thought I was dying, and so did my husband. The doctor made decisions and performed procedures based on inaccurate information that caused me great pain. I wasn't notified of his intention to perform these procedures prior to his performing them, so I had no control, choice, or opportunity to understand what was happening. I was objectified to the point that my husband and I both felt that I was treated like a vessel, and not like a competent woman. With all of the physical complications, I retreated inside myself, and was for the most part unaware of anything else happening in the room. Some things made it through, but for the most part, I was locked in my mind scared, in massive amounts of pain, and consumed by everything that was going wrong. Those feelings continued throughout my stay at the hospital. Questions were given half-answers. The nurses continued to trivialize the experience when I desperately needed validation that the event hadn't been typical. I was weak, and incapable of voicing my true needs. I finally just gave up trying to get answers, and focused on getting discharged. I wanted away from all of the people who were supposed to be taking care of me. I wanted out of the place that had failed to keep me safe. I was traumatized.

I didn't want a PTSD diagnosis. I grew up in a house where my father had PTSD from the Vietnam War. I know that while the symptoms fade over time, this never really goes away. PPD would have been easier - take drugs for a year, and you're all better. This was a gut shot. It never goes away. The nightmares have tapered off, and the flashbacks are becoming less frequent. However, I always have to watch out for triggers. Things like people not listening to me can send me into a rage. A call from the hospital, or catching sight of my former OB at the clinic can send my blood pressure screaming high. I have to remind myself to stay in the present when I'm talking to mom's with new babies. I avoid telling the story of my daughter's birth because my feelings are still to raw. It's a lot better than it was. I'm not as obsessed, but this is the new me that I'm learning to live with.

The Power of Words

I picked up the mail yesterday, and found a flyer from the hospital foundation. On the exterior of the envelope, along the bottom, left-hand side was their new motto: Transforming Lives. It made me start thinking about all of the comments that have really struck me to the core in the last 17 months. Most of the time, the comments were meant to be reassuring or innocuous, but they weren’t either of those things to me.

The first one was, “do you want to hold your baby?”, and my subsequent response, “No”. Doesn’t that seem like an innocuous question and response? The only problem was that question was asked just as I was realizing that things were going really wrong. I didn’t know what, but I was starting to feel dizzy, spacey, and a little woozy. Holding my daughter would have been a huge mistake, but I couldn’t get past my feelings of failure that I didn’t “want” to hold my baby. It would have been easier to say no to “Are you ready to hold your baby?” There’s a huge difference in the connotation of ready and want. One implies ability while the other implies desire. I desired holding my child, but I recognized that physically that wouldn’t have been smart.

When I went back to work, one of my co-workers asked me when I was going to have another child, “after all, popping out another one is no big deal”. Wow, what I experienced was “no big deal”! Everyone sure thought it was a pretty big deal that night. People were in and out of the room, trying to find the anesthesiologist, and shoving needles in my hands. So, just for the record:

hemorrhaging 60% of the blood in your body, no big deal
attempting to delivery your uterus, no big deal
needing the placenta to be surgically removed, no big deal
doctors debating if you should go to the ICU, no big deal
blood pressure crashing from 200 / 120 to 50 / 30, no big deal
needing 8 IV’s to pump all of the drugs into you, no big deal
believing that you’re dying as they roll you into the operating room, not a big deal

It’s amazing the things people assume about birth. They have no clue what your experience was, and yet they make the assumption that it was just like their sister’s or wife’s or friend’s experience. Even my parents and in-laws were guilty of this. They were too caught up in the moment to see beyond the baby.

The first time I interviewed a new OB, he told me, “The worst OB in the world can give you a better birth experience than you had the last time.” I know it was meant to be reassuring. I was supposed to be comforted by that statement, but to me it was a condemnation of my skills in finding and choosing my previous doctor. After all, if the “worst OB in the world” is more competent than my previous OB was, what does that say about my choice? It was patronizing, and I never went back to him. The last thing I needed was someone else patting me on the head like a child.

What about, “you didn’t advocate for yourself” and “you didn’t educate yourself”. I love these ones, because it puts all of the blame on mom for the poor outcome. No one else has any responsibility because she “didn’t advocate or educate” herself. So, moms are supposed to read the doctor’s minds. We’re supposed to be more educated than the caregivers we hire. We’re supposed to argue, refuse, or question every time a medication is adjusted, a tool is picked up, or a twinge is felt. We’re supposed to have eyes in the back of our heads, and no matter what our physical and emotional condition we’re supposed to be able to force medical personnel to answer questions truthfully. We’re supposed to know if a homebirth is a better option than a hospital birth or a water birth. We’re supposed to know if we should take Hypnobirthing, Bradley, Lamaze, or the hospital childbirth education class. We’re supposed to know which books are the proper ones to read. Wow! Did you know that pregnant women have superhuman, omniscient, god-like powers? What a crock! Advocacy requires open and honest communication between caregivers and patients. Without that free-flowing information a patient cannot be an effective advocate for themselves. As for education, there’s no way for any one person to know absolutely everything about birth. Most of the time it works just fine, but sometimes interventions are necessary. We all make the best decisions at the time with the information we have at hand. All these statements do is blame the mom for her experience, and sometimes mom’s not the one who should be blamed.

“Transforming lives”, the hospital certainly transformed my life. They didn’t just make me a new mom; they traumatized me in the process. I became a victim of medical assault. I was trivialized, de-humanized, and objectified. They dismissed my attempts to advocate for myself. They ran roughshod over me and my husband. We didn’t leave as a happy family of three. We left broken. I had a husband who hated his child because she “caused” mom to be so sick. I left unable to give my daughter a bath without triggering a flashback. I was weak from blood loss, and emotionally destroyed by the experience. Then they re-traumatized me by asking me to fund their initiative to create a hotel-like atmosphere in the birthing center so they can “transform lives” when what they really need is to make sure they’re properly staffed for an emergency. Private rooms, rugs on the floors, pretty drapes at the windows, and sofa beds for dad to sleep on aren’t going to help the mom who needs immediate surgical care, and there’s no anesthesiologist on the premises.

Finally, my two favorites that always seem to come together. “You should be grateful that you have a healthy child”, and “all that matters is a healthy child”. Why do people believe that being grateful it all turned out okay doesn’t mean that you can’t be angry about how it was achieved. The two feelings aren’t mutually exclusive, and the co-existence of those two emotions is part of what makes recovering difficult. I’m grateful that the OB I chose was competent. I’m grateful that he held everything together until the CNA and the anesthesiologist got back to the hospital. I’m grateful that he was capable of resolving the issues without resorting to a hysterectomy. However, that doesn’t mean I’m not angry that he failed to communicate what was going wrong to me while I was capable of understanding it. It doesn’t mean I’m not angry that I was treated like a vessel, and not like a human being. It doesn’t mean I’m not angry that he didn’t ask if the epidural was working before he tried to pry the placenta out of me. There’s this dichotomy of emotions that I struggle with everyday. As for the “all that matters is a healthy baby” statement, does mom not count? Does dad not count? A healthy baby needs a healthy home. They need parents who care for them. When a parent can’t stand the thought of holding their own child, they’re broken. The home is broken, the family is broken, and the baby will eventually grow to be broken too.

Words have amazing power. Choosing the right ones can be difficult. For moms with PTSD or other post-partum mood disorders, the wrong words can wreak havoc on their recovery. They cut us to the bone, instead of building us up. I know it’s not intentional, but words can cause damage too.

Blindsided, continued

Well, I decided what to do. I tracked down an e-mail address for the hospital foundation. I wrote a brief, polite e-mail to them asking to be removed from their call list. Letting them know that I could no longer support their organization after the poor quality of care I had received as a patient 17 months ago. I've spent thousands of dollars in counseling costs, time off work, and gas costs to learn how to cope with the PTSD. Funding my tormentors is simply not going to happen.

They've responded to the e-mail, so hopefully this issue is now resolved.

Blindsided

Why is it that just when I think I'm getting better something blindsides me again?

Several years ago, my co-worker's wife died. My co-worker asked that donations be made in his wife's name to the hospital where I ended up delivering my daughter. I chose to make a donation, so I ended up on the fundraiser mailing list.

Last night, I received a phone call from the hospital foundation. The volunteer was expounding on the great things the hospital provides to the area, but all I could think about was the damage they had caused me. I clammed up, and let her ramble through her spiel. Obviously, I didn't respond in the typical manner because she suddenly stopped mid-sentence and asked if another time would be better. To give myself time to think about what to say, I told her that she could call back another day.

There's no way that I can donate money to this organization. They're more concerned with their expansion plans than providing good care to their patients. They're more concerned with the aesthetics of the birth center than the safety of the women birthing there. I've spend thousands of dollars on counseling. I've taken tons of time off work without pay to go to the counseling sessions. I nearly lost my marriage because they didn't care enough to make sure their patients were treated well.

Obviously this volunteer doesn't need me to go off on her about the poor care I received, but how do I get the point across that their "care" is lacking? I know I can "just say no", but I'd like to give them an explanation why without really delving into the details.

Does anyone have any suggestions?

Building Relationships

If having a relationship with your physician is essential to building trust, who should initiate the relationship? The patient? The physician?

I didn't form a relationship with my former OB. I went to my appointments. I was honest. I took his advice. I asked questions when I had them, but being the last of my friends to become a parent left me with most of my questions answered. I read books. I searched the internet. I didn't write a birth plan because I recognized that each complication eliminated choices, and there was no point in getting myself hung up on a specific vision of the birth when I knew how quickly things could change. Was it my fault we didn't form that relationship?

I walked into my first appointment with him scared because I'd spotted over the weekend. It stopped after an hour, so I didn't feel it was necessary to go into the ER to get it checked. I simply set up an appointment for right away Monday morning. Throughout my whole investigation into choosing a new doctor, it had never occurred to me that I would stay with this one. My thoughts from the get go were simply to find someone to help me get this baby out safely. I had every intention of going back to a family practitioner after the baby was born. Was that the "fatal" flaw in my thinking? Should I have been committed to this relationship before it started?

I saw the situation similar to that of needing any other specialist. The family practice doctor refers you to a specialist for a specific condition. The specialist helps you resolve that condition, and you go back to your original doctor. There's no need to see an ENT if you sprain your ankle, right? Was I wrong in considering my pregnancy to fit this model? Or, was he wrong in not instigating it? Should he have done more than ask the specific diagnostic questions that helped him guide me down the path. Was he responsible for bringing up his birth philosophy to me, his patient?

After I left his care, I interviewed several doctors around the metro. I checked out doctors at the large urban hospitals. I checked out doctors that my co-workers saw. I didn't "click" with any of them. Instead of being reassured, I felt devalued. Instead of being calm, I felt anxious. Instead of feeling autonomous, I felt trivialized. Even my family practice physician, someone I'd seen for 15 - 20 years, contributed to my feelings of betrayal. He made a huge mistake in referring me to my former OB's wife for counseling, and this destroyed our relationship. I felt uncomfortable seeing him. I was afraid to be betrayed again, so I kept trying to figure out what to do since I knew I couldn’t remain in that relationship.

I was surprised when I met Dr. B for the first time. She really initiated the beginning of our relationship. When I tried to trivialize my experience, she forced me to expound on it. When I tried to change the topic, she circled me back around to the problem. She made sure I was getting help. She offered different options for treatment based on my current issues like flashbacks, anxiety, and dissociation. She made sure I was comfortable. She didn’t rush me out the door. She made sure I was okay with my daughter. She made sure I was okay with my husband. She looked for emotional well-being as well as the physical which ended up being easily cured.

As for my old OB, well, I have to accept some portion of the responsibility for not building a relationship with him.

Maybe we failed each other.

Trust

Do you trust your doctor?

Is trust essential to the doctor – patient relationship?

I’ve read several blog posts by healthcare providers talking about trust. In one, the author basically requires trust from her patients. She believes that she works hard to develop a trusting relationship throughout her client’s pregnancies, and in an emergency those clients should immediately acquiesce to her demands because she’s built a relationship on trust, and in an emergency she shouldn’t have to stop to explain the complications, the patients should simply react. In another blog, the caregiver demands that patients who don’t trust him should find other care. In a third blog, the caregiver wants to find a way to study a trusting relationship, and bring the concept into evidence based practice. However, is trust too strong a word for what they really want?

Trust is difficult for me to give. I don’t trust my parents. I sometimes trust my husband, but not always. I don’t trust my daughter. After all she’s only one, and she doesn’t have any concept of the long term consequences to her behavior. I don’t know that I’ve ever trusted a physician. I respect them. I’ve found most of them to be well-educated in matters that I’m not educated in. I’m willing to take their advice because I believe that they’re actually looking out for my best interests, although I have been willing to negotiate other treatment options with them when I believe it’s justified. Isn’t that enough?

I lost all trust I had in my former OB after my daughter’s birth. His lack of communication in an emergency destroyed my respect for him. Without communication, information, or knowledge there is no consent. Without consent, there is only anger, fear, and violation.

My husband lost his trust as well. His was lost due to non-verbal communication during the emergency. He recognized the "Oh shit, I'm fucked" look on the doctor's face before he started verbally communicating. At that point, my husband checked out of the room. It brought up all of his barriers, and he never heard anything the doctor said after that.

Communication, especially during an emergency, diminishes fear. It keeps the patient feeling like they’re still in control even though chaos may be swarming around them. It gives them something to cling to when they’re fading in and out of consciousness. Open and honest communication during an emergency, even if it’s not a full explanation, can keep a patient calm, focused, and rational enough to comply with the needs of the medical staff. Knowing what and why things are happening helps patients to process the event as medical procedures.

It took me several months to find a new caregiver after I left my former OB and my former family practice doctor. I found that I couldn’t stand the thought of having a man examine me. I just kept waiting for the other shoe to drop despite the 15 – 20 year relationship I had with my former family practice doctor. Our relationship wasn’t strong enough to withstand the distrust I now experience with male doctors. I even interviewed a new OB at a different hospital. He tried to sound positive and uplifting, but instead came off as patronizing. The last thing I needed was another doctor who believed that he is or was infallible.

It was a fluke that I found this new doctor. I called the clinic to make an appointment to see any female doctor, and this is the one that had an opening. It wasn’t well-researched, but she listened to me. She didn’t let me off with the dismissive practiced answers I had for my pregnancy. She ferreted out answers, and as a result I switched my and my daughter’s care to her. Patients need to develop a relationship with their doctors. I don’t know that it has to be built on trust. I do believe that respect is a strong enough bond. However, it’s difficult to build a relationship when you only see a physician once or twice a year. By having her care for my daughter I increased the number of times I see her in a year to almost once a month. I don’t trust her. I don’t trust any doctor, but I respect her knowledge. I respect her training. I respect her ability to listen to my concerns, and help steer me down a path that meets my needs.

Maybe it is trust, I don't know. Personally I think it's too strong a word, and yet when I researched this issue for the presentation I'm giving at the hospital, this is the word used in all of the articles I found on improving patient care. Patients who trust their doctors are more compliant. Patients who trust their doctors are less likely to file a malpractice claim. Patients who trust their doctors get better care. However, hospitals are adding patient advocates to help facilitate communication between doctors and patients. I wish my hospital had instigated this program before I was a patient.

If it is trust, I know it takes a long time to build, and only seconds to destroy. It's kind of like handing your sixteen year old the keys to the car for the first time only to have them call you 5 minutes later to tell you they've been in an accident. More than likely it will be a long time before you let them drive by themselves again. Eventually you might give them a second chance. I never let my doctor have one.

A letter to my doctor

I wanted to take a few minutes to let you know why I decided to file a complaint against you this winter, and explain to you the lasting consequences of your actions the night of May 11, 2007.

I trusted and chose you to be a part of my transformation from a woman to a mom. I know for you it was just another delivery. It was just another series of complications to overcome, but for me it was a life changing event. For 32 minutes, I experienced the joy that comes with that transformation, and then you forced me into another transformation, a rape survivor. I know that wasn’t your intent. You were trying to avoid worrying me with another complication when you believed that you could easily and painlessly eliminate it. However, a yellow plastic gown, latex gloves, and a medical school diploma hanging in your office don’t make you God. It was my body that you violated. You humiliated and shamed me in front of my husband, daughter, best friend, and the nursing staff. I was vulnerable and trusting, and you betrayed me. Instead of treating me like an adult capable of making decisions, you treated me like an unfeeling object. Epidural or not, labor or not, my vagina is private. It’s up to me to decide who and what invades it. You abused your power, and denied me the opportunity to consent. You denied me the ability to process the event as a medical procedure. There was no warning, no understanding. The pain was indescribable. I know you tried to explain what was happening afterwards, but the pain was an incredible barrier to my understanding. The blood loss was too great, the change in blood pressure too rapid for me to process what was happening. I became legally incompetent so rapidly, that I can’t even figure out who signed the consent form for the D & C.

My primary care physician told me once that he really enjoyed delivering babies. It’s one of the few times that someone goes home with something after being in the hospital. I went home with a lot of things. I went home with a newborn. I went home with nightmares. I went home with flashbacks. I went home isolated because births like mine are not to be discussed. You don’t discuss birth rape over a cup of coffee at Caribou with an infant beside you.

Do you want to hear my version of Jennavive’s birth? I’m sure my version differs from yours?

“One more push to get the shoulders out.” I hear the doctor say. Despite not having any breath left, I try once again to push. I feel myself tear as the baby slides out, and they lay this gooey baby on my stomach. I’m in shock, she looks like an alien. There was nasty gooey mucus covering her whole body along with streaks of blood. I wish I could say I loved her at the point, but I was appalled by how she looked. I was relieved when the nurse took her away to be measured, weighed, tested, and cleaned up. At 11:45 pm, the doctor asked the nurse to tell him when 15 minutes had passed. I thought it was kind of odd at the time, but I was really starting to feel a sense of accomplishment and joy. I was watching the nurse cleaning her up while my friend took pictures. I was starting to feel a little odd, but I remember telling the doctor that “his 15 minutes was up”. The nurse asked me if I wanted to hold the baby, but I said no because I was feeling really woozy. My friend brings her over for me to touch. I reach my hand out to her. PAIN!!!! My hands are fisting in the sheets, and I’m fighting not to scream. My breathing is ragged, and I don’t know why the doctor’s hand is in my hoo-ha. I try to get away, I’m scrabbling with my hands trying to drag my body up the bed, but with the numbness in my legs I can’t escape. My vision is blurry, and I start seeing spots when I hear the doctor tell the nurse to get the surgical team. I’m struggling to stay conscious to focus on my daughter, but everything fades to black. Why do I need surgery? I don’t know what’s happening. The baby’s already here. I can’t leave her. I hear the angry voice of the doctor, “what took so long, where are they?” The nurse answers, “They left for the night. It will take an hour to get back to the hospital.” Why is he so angry? I don’t understand what’s happening. The pain is so intense it takes my breath away. They strap the oxygen mask over my face, and I feel the pricking of needles. Are they doing a hysterectomy? I still can’t see. Where’s my baby? I can’t abandon her. I hear fear in the doctor’s voice. “Where the hell are they”, he yells at the nurse. I’m so scared now. Am I dying? I can’t abandon my baby. My husband will never forgive her if something happens to me. I have to stay here to raise her. Do whatever it takes, but keep me here to raise her. Alarms are going off. What’s happening? I hear a new voice, and I feel the bed moving. They’re rolling me down the hallway to the operating room. I sense the bright lights, and feel myself being transferred to the operating table. The voices are frantic. I feel more needles pricking me, and everything fades to black…

This is what you left me with. Each year on her birthday, this is the story that I will remember. Do you remember your children’s births? Do you remember the joy you felt? I don’t. It was so fleeting. I remember the pain, anger and fear. I’m glad that you’re skilled enough to have kept me alive. I’m glad that I’m here every day to enjoy my daughter, but I can’t forgive you for the pain you caused.

I wrote the complaint to the state medical board because you crossed a line that should never be crossed. It’s my small attempt to remind the medical establishment that patients have rights. I wanted to remind you of the Hippocratic Oath. Isn’t there a line in there about “doing no harm”? You caused harm that night. It’s my small way of facing my attacker, and while you’ll probably get off scot-free at least I tried to change it for the women who will tread this path after me.

I wrote this several months ago, but I'm finding myself struggling again. My co-worker's induction is scheduled for next week, and I'm worried about how things will go for her. I just don't want to see her end up in the same place I am.

Reading this today made me realize just how much anger I still harbor towards the doctor. I guess the PTSD comes in waves. I feel strong for a while, but then something sucks me back down. I know part of the problem is a story on my SOLACE forum that really struck a nerve. A mom went through a post-birth experience similar to mine, and has never felt validated in her feelings. Reading her story, and feeling her pain, anger and fear radiating through it just smacked into me.

Sometimes criminal activities take place in the bright lights of a hospital. It's not intended to be that way. I know there's no intent, but the action itself is criminal. If a patient is fighting to get away from you, they're in pain. If they're screaming at you to STOP, stop. If you're more worried about what their family members are seeing there's something wrong with your morals. Patients are humans. We're autonomous. We have feelings. We're not objects. Treat us with the respect that you expect us to treat you with. Listen to us. Answer our questions. Allow us to trust you. Don't betray us in the heat of battle.

Choices

Should patients be “allowed” to make their own choices about their care? Should they be entitled to make the final decision? There are some situations that are truly emergent. In those situations, does the patient lose their right to choose?

Obviously, each situation is unique. There are times when different doctors have different opinions about how to treat a patient. Isn’t that why we “get a second opinion”? We’re trying to decide what course of treatment to follow. Do we have surgery, take medicine, or ignore it and do nothing? In my case, the doctor tried three different treatments before he successfully corrected the problem. Shouldn’t it have been my choice which one to try? He tried applying cord traction, he tried to manually remove the placenta, and he finally performed a D & C before he got it out. Was this a reasonable course of treatment? He did start with the least invasive procedure, but if there was time to try three different treatments there was time to talk to me about it before he started performing them. He didn’t believe it was emergent when he started on the cord traction. He didn’t believe it was emergent when he tried prying it out. He didn’t label it as emergent until he needed surgical assistance, and even then it was HIS choice, not mine. Maybe if we’d discussed it right away it wouldn’t have been so chaotic. If he’d talked about it right away maybe we could have requested help BEFORE it became emergent. Maybe I would have processed the whole thing as a medical procedure instead of a rape, a violation, an abuse. Maybe if he’d discussed it, he would have known the anesthesia wasn’t working and recommended a different course of action. Would I have chosen going straight to surgery? I don’t know. I probably would have followed the course he thought was best, but at least I would have had the opportunity to ask questions, provide necessary information about pain relief, and OWN my decision. I would have understood, who, what, why, when and where. I wouldn’t have been locked in darkness, despair and fear.

We deserve to make our own choices. When we choose, we can accept our responsibility for what happened. We “own” the choice. It’s hard to own someone else’s choice. It’s hard to take responsibility for someone else’s actions. I wish I owned the choices that night, but I was nothing, a uterus, a vessel, a doll.

I didn’t deserve to be objectified. I didn’t deserve to be ignored. I didn’t deserve to be treated like a liar and an over-reactor. I didn’t deserve to be deceived.

I did deserve the opportunity to participate in making my own healthcare decisions. I did deserve them listening to me. I did deserve owning my decision. I am and was an autonomous, capable, intelligent woman who was more than able to make difficult decisions regarding my care. I didn’t need a protector, a god, or a physician dictating my choices. It should have been my choice. I paid him to guide me. I wanted his advice. I didn’t give him the right to take away my choice, my power, or my autonomy.

Why does the concept of advocacy haunt me?

I don't know why, but I continue to struggle with the concept of advocacy. I just can't seem to find any peace. I know that advocating for yourself does not mean diagnosing yourself. It doesn't mean being more knowlegeable than the doctor. It has to do with knowing your limitations, and communicating your needs in an appropriate manner.

I came across this old, from 3 - 4 months ago, piece of writing, but I'm still struggling with it. Maybe putting it here will help.

One of the issues I've struggled with over the last year is the concept of advocacy. In other forums, I've been attacked on the issue of “properly” advocating for myself during the birth. My last two counseling sessions, we’ve worked on this issue. Trying to eliminate / mitigate the shame I feel when I’m reminded of this attack, but it’s left me with a lot of questions.

I've struggled to figure out where I failed, or even if I did fail to advocate for myself. Did I set myself up for the experience that I had? Is it now a requirement to become educated in the most obscure pregnancy complications before setting foot in a hospital? Are the doctors, midwifes, and nurses no longer responsible for educating their patients? Does a care giver only need to provide answers to the questions their patients ask, or should they offer up more information? Whose responsibility is it to initiate the communication between a doctor and a patient? Is it now the patient's job to ferret out the details of their own health? What about when a patient is unable to advocate for themselves? Does that mean that the doctor is free to do whatever they wish with no thought for the patient? Is it okay for the health care providers to intentionally avoid answering questions? Is it okay for them to sneak medications or perform procedures when the patient's view is completely blocked without notifying the patient of their intent? Is it now the responsibility of anyone supporting the patient to provide the patient with a blow-by-blow account of everything going on, so that the patient can effectively advocate for themselves?

Looking back, I did a pretty darn good job of advocating for myself when I was aware of what was going on. I was handling the pain really well, but my blood pressure was skyrocketing. I knew that we had to bring it down, or I’d end up with a c-section. When the doctor suggested the epidural, I thought okay. I can try it, hope that it lowers my blood pressure, and end up with a vaginal delivery, or I can choose not to have it, and end up needing it anyhow for the c-section. It seemed like a pretty smart move to try it, and see if it would work. However, the anesthesiologist disagreed with my doctor’s suggestion. When he asked if I wanted it I said, “Yes, the doctor wants to try it to bring down my blood pressure.” He gave me song and dance on the risks of epidurals. I was lectured on not using it for anything other than pain relief. I was unwavering in my insistence that he give it to me. I went toe to toe with him while the contractions were coming right on top of each other. They pass the stupid things out like candy, why on earth was he being so stubborn? I finally lied. He knew I was lying, but he caved. It’s kind of hard to dispute pain with a laboring woman. Ultimately, I was successful. I understood the severity of the situation, and I was willing to go to bat for my decision. I also successfully advocated for myself during the pushing stage. I knew there was something prohibiting my daughter from descending, and I asked for assistance. It turns out her head was crooked. I might have been able to do it myself in a few more hours, but I was exhausted. It was a relief to have them assist me with the vacuum, and have the pushing stage be over.

The problems arose when the medical staff chose not to provide information. I was surprised when I received my medical records to find that they had been giving me IV blood pressure medication during labor. It seemed so odd to me because they were very precise when giving me oral medication to tell me exactly what each pill was. They lined them up in the little paper cups. “This is your thyroid medicine. This is your allergy pill. This is the stool softener. This is…” You get the idea. Why is it okay to not tell a patient that you’re putting medicine in the IV if you have to tell them exactly what you’re giving them orally? Shouldn’t the same standard be applied? What about notifying patients before performing invasive procedures? The doctor chose not to tell me that the placenta was stuck. I was just the patient. Why would I need to know that there was a problem? He thought he could be a hero. I had a difficult pregnancy. I’d been plagued by complications. In some ways I can see where he thought he was “doing me a favor” by not having me face another one, but I probably wouldn’t be here today if he’d shared the information with me. Especially since his efforts failed, and in failing he exacerbated the situation. The rate of hemorrhaging increased because he tore the umbilical cord off the placenta, and we think this might have caused the uterine inversion. His attempt to manually remove the placenta caused so much pain because the epidural didn’t work that I couldn’t comprehend what was happening. I couldn’t advocate for myself through the pain because I couldn’t find my voice. Instead of screaming, I clammed up. My brain was compromised by the hemorrhaging. It was too busy keeping me alive to send the right signals to my mouth to form questions. It was like someone took hold of my throat, and wouldn’t let any air through it. Even when the doctor did try to explain what was going on, he spoke to the room in general while focusing on my hoo-ha. He didn’t try to get MY attention. He didn’t come up to my face, and speak to ME. There was no effort to have a nurse re-explaining it to me or my husband. There was no discussion of how to deal with the problem, he simply announced, “I need the surgical team.” I didn’t know why. I didn’t know the name of the procedure.

The secretiveness didn’t end there. When I came out of surgery after they re-installed my uterus, managed to remove the placenta, accomplished getting the uterus to contract back down which stopped the bleeding, and restored my blood pressure to a reasonable pressure, the first thing I asked was, “what happened?” I can understand my husband not being able to tell me. His fear was so great the he couldn’t comprehend the doctor any more than I could. He told me he’d get a nurse to explain it since the doctor had already left. The only thing she told me was, “you had a lot of bleeding”. They didn’t tell me what procedure they’d performed. They didn’t tell me why they’d performed it. They didn’t tell me how serious it was. They didn’t tell me it could happen again. I have to admit that while I attempted to advocate for myself at this time, I didn’t do a good job. I was so weak from the blood loss that I didn’t even think to ask all of the questions I should have, but they knew how severe the situation was. Why should the responsibility be placed on the patient to question them when they know how compromised the patient is? Should they really be able to fall back on the, “well you should have advocated for yourself” excuse? Where does the patients responsibility end and the medical community’s responsibility start?

I keep coming back to the need for good communication in order to be a successful advocate. There has to be a level of trust and honesty between the caregiver and the patient. The patient needs to answer questions honestly, listen to the recommendation, and ask questions if they don't understand or want more detail. However, the caregiver needs to do the SAME thing. They need to ask probing questions. They need to listen to the patient's verbal and non-verbal cues. They need to answer questions honestly. They need to explain why they're making this specific recommendation. They need to speak to their patient, and not the room in general. They need to recognize that their patients are autonomous, individual, and unique. They need to recognize that what works for patient number two won't work for patient number four. They need to realize that we each have different ways of analyzing risk, and they need to be honest about their doctoring philosophy. They need to be trustworthy.

Trust is difficult to build. It takes more than having a patient pee in a cup, get their blood pressure taken, measure a belly, and listen to a heartbeat. It comes from initiating difficult discussions. It comes from asking questions. It comes from giving honest answers. It comes from being open. It comes from not making assumptions. It requires open and honest communication. However, it helps everyone get through a difficult situation.

There was no good communication on the night of my daughter's birth, and this resulted in a failure on my part and their part for me to advocate for myself.