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.