Thursday, August 28, 2008

Meeting with the hospital?

My new doctor has asked me to participate in a discussion at the hospital where my peanut was born about how they can improve care. I’ve been struggling to decide if I should participate. With my PTSD, I’m afraid I might experience some flashbacks during the presentation since it would be held at the hospital. I’m afraid I might break down into tears with little or no provocation. However, I also feel compelled to help them figure out a way to make giving birth in a hospital setting a safer more empowering experience.

I’ve been trying to figure out what they could change. In some ways this seems a bit redundant since I sent them a letter a few months after my peanut’s birth letting them know what I thought they could change. Don’t you think this is pretty specific?

My family has been utilizing your hospital and clinics since I was a child. We’ve always been pleased with the quality of care that they we have received as a patient in your facility. Several of my friends have had their babies in the Birth Center, and been very satisfied with their experiences as well. Therefore, when I became pregnant last September it never occurred to me to give birth anywhere except your facility. After all, in my home town, you advertise on the digital billboard about the extraordinary ratings that you’ve achieved in the Birth Center.

Allow me to begin by stating that I wasn’t expecting a perfect labor and delivery. I’d had far too many complications during my pregnancy to expect labor and delivery to go smoothly. I entered the hospital that morning with a verbal birth plan, discussed with my husband and labor coach, basically stating I would do whatever it took to walk out of the hospital as a healthy mom with a healthy baby. However, I walked out of your hospital as a mentally traumatized, physically healthy mom with a healthy baby.

Therefore, I just want to take a few minutes to let you know of some ways that you could improve care in the Birth Center after being a patient in May 2007.

1. Make sure Birth Center is adequately staffed for an obstetrical emergency even when no one is actively in labor on the premises.

Because of all of the complications I experienced during the third stage of labor, I ended up requiring emergency surgery. At the time the doctor notified the nurse of this need, the C-Section team had been sent home for the night. It took 45 minutes after the doctor requested help for them to arrive back at the hospital. During that time, the doctor was limited in his ability to stabilize me. My blood pressure plummeted. I hemorrhaged 1500 ml of blood, and my uterus began inverting. The situation could have been managed much more efficiently if the doctor could have obtained help from the members of the team immediately. Given your location, only 30 miles outside of Minneapolis, and the growth the community has experienced in recent years, it never occurred to me that you would not have a C-section team staffed 24 hours a day. Obviously the additional staff would cost the hospital money and possibly delay the expansion plans you’re currently implementing. But the cost of the additional staff is far less than the cost of losing a mother or baby to an obstetrical emergency that was not properly managed due to a lack of trained personnel available at the time of the emergency.

2. Make sure the patient understands and consents to procedures being performed on them.

Procedures were performed on me after the delivery of my daughter without my consent or any explanation of why they needed to be performed. This was an emergency situation; however, that doesn’t negate the patient’s right to be informed prior to procedures being performed on their body. Even a cursory explanation would have been adequate. It only takes 30 seconds to tell a patient “Your bleeding is excessive, so I am going to apply traction to the umbilical cord to get the placenta to release”, or “That didn’t work. We need to try a manual removal of the placenta to stop the bleeding”, or “Neither procedure worked. We need to go to surgery to remove the placenta, and stop the bleeding.” During the aforementioned procedures, I was still conscious and capable of consenting to the procedures if I’d simply been given the chance. Even if the doctor was too busy handling the emergency, a nurse could have given me the basic information. It would have been much more reassuring to me if I had known why I needed surgery instead of just being rolled into the operating room with no explanation. Also, after I became unconscious, my husband should have been informed about my diagnosis before I was sent to the operating room. Since the doctor was preoccupied trying to save my life, a nurse should have taken on this responsibility.

While the doctor did discuss the procedures with my husband after the surgery, my husband did not understand what had happened. He needed my labor coach to re-explain everything to him after the doctor had left. Given the dismissive attitude of the doctor throughout my delivery my husband felt uncomfortable asking the doctor for more information, or to re-explain it until he achieved a full understanding of what had transpired and how it had been corrected.

3. Give patients all pertinent details about their condition. This should include but not be limited to what was done, why it was done, and how it was done.

When I first came out of recovery, no one gave me the full story on what had happened. I was originally told that I’d simply had a lot of bleeding. I wasn’t told until 12 hours later that my uterus had begun turning inside out and that the placenta came out in 20 different pieces. It wasn’t until I received my medical records that I found out that I also had uterine atony, hypotension, and two additional tears (one a vaginal tear). I was also never told how serious the emergency was, or told that they had considered transferring me to the ICU instead of leaving me at the Birth Center. I also discovered that my daughter had an asynclitic presentation, and that the umbilical cord had avulsed from the placenta. When I asked what had happened I deserved to be given every diagnosis and a detailed explanation of the procedures that were performed. The severity of the complications should have been explained to me at that time, and I should have been informed as to the possibilities of this happening again in future pregnancies. A printout of the clinical diagnosis should be given to patients, so that they can research the conditions at home since there is no internet access available at the hospital to patients.

4. Before being discharged, make sure patients know what medications were administered.

When I delivered my daughter, I had one IV in my hand. When I woke up in recovery, I had seven IV’s in my two hands. Other than the blood transfusions which I consented to, I didn’t know what was in the other IV’s. This information should have been given to me without my needing to track down my medical records. Upon receiving those records, I found out that I’d been given blood pressure medication during labor. I was completely unaware that this was being given to me along with the pitocin for the induction. I was also not told about the nitroglycerine that the anesthesiologist administered to relax my uterus, so it could be repositioned. I wasn’t informed about the IV antibiotics that I was given to prevent infection, the anti-shock medication, or the medication to help my uterus contract in addition to the pitocin I had already received. Since these medications were never discussed with me, I also wasn’t given any information about how they could impact my daughter if I chose to attempt breastfeeding. I had considered trying to breastfeed after I went home, and it’s a good thing my body didn’t produce any milk because the antibiotics administered to me should not be taken by a breastfeeding mother. It’s simply incongruous that the nursing staff went out of their way to tell me exactly what medication I was being given orally, but failed to tell me what I was being given intravenously. A printout should be provided to all patients prior to discharge with a list of medications they have received in addition to the discharge instructions with any medications to be continued listed.

5. Make sure that the doctors validate that their patient is actually experiencing pain relief prior to performing painful procedures.

The epidural did not provide any pain relief for me in the uterine area. I experienced numbness in my legs, but I experienced every contraction, and could feel myself tear as my daughter slid out. Because I chose to have the epidural to lower my blood pressure instead of for pain relief, I didn’t notify my doctor that the epidural had been unsuccessful. Apparently the nurses also failed to communicate to the doctor that I had total feeling in my uterus, so when he performed what I now know was the manual removal of the placenta the pain was excruciating. Even though I couldn’t move due to the numbness in my legs, I actually was fighting to get away from the doctor during this procedure. A little communication would have gone a long way in this situation.

6. Make sure that the staff members introduce themselves to patients when checking on their condition.

Someone from the C-Section team checked in on me the afternoon following my surgery. However, because I was unconscious when the team had arrived at the hospital, I had no clue who the person was. I had to ask if he had been there the night before, and even then he didn’t identify his role in treating me. It’s quite disconcerting as a patient to not know if the person speaking to you is actually on the medical staff.

7. Make sure that if doctors disagree on a course of treatment that they work it out between themselves instead of putting the patient in the middle.

Due to the high blood pressure I was suffering from during labor, my doctor suggested than an epidural be placed which would result in lowering my blood pressure. The doctor wanted to avoid giving me magnesium sulfate due to the side effects that it produces. I consented to this course of treatment. The anesthesiologist came to place the epidural, and apparently he was uncomfortable with my answer to his question about if I wanted it. I ended up needing to argue my doctor’s position with him instead of him talking to my doctor about it. I’d already read and signed the consent form, so all this did is increase the tension everyone in my delivery room was feeling.

8. From my and my husband’s memories of the event, there seemed to be communication problems between the doctor at the clinic and the nurses at the hospital. This should be addressed in a hospital-wide policy.

There were several times that the nurse would tell us that she would go contact the doctor, and it would take close to an hour before she would come back with a response. The nurses were quite concerned with the rate at which my blood pressure was climbing, and the stress it was putting on the baby. My husband has told me that the nursing staff actually considered sending someone down to the clinic to track down the doctor at one point. It also seemed to take a long time for the doctor to respond after asking for help in delivering my daughter. Due to my failure to progress with pushing, we requested help by either vacuum or forceps to deliver my daughter. It took an hour after we made this request for the doctor to present himself. I don’t know why this delay occurred, but it was very frustrating, and it didn’t foster a sense of calm in the delivery room.

9. Upon cleaning up my daughter, the nursed asked if “I wanted to hold my baby?” Please ask the nurses in the delivery wards to phrase this question “Are you ready to hold your baby?”

That question has haunted me for months. I feel like the world’s worst mother because my answer was no. I desperately wanted to hold my daughter. However, I was afraid that I would hurt her because I was feeling so funky. At the time I wasn’t aware that I was hemorrhaging, and that my blood pressure was transitioning from being hypertensive to hypotensive. I know in my head that this was the correct decision to make, but I still feel guilty about my answer. I’ve also heard other women commenting on not being able to hold their baby due to shaking from the epidural, so this isn’t something that is limited to women experiencing a traumatic birth.

After researching the complications I experienced by reading medical journals and watching medical school PowerPoint presentations on obstetrical emergencies, I know the course of action my doctor followed is the standard response to those emergencies. I also believe that my doctor performed these procedures in a well trained, competent manner. However, my doctor was also arrogant, dismissive, and uncommunicative. Those attributes don’t foster the positive experience that you advertise on billboards throughout the west metro. Perhaps the doctors at your facility could use a remedial course in bedside manners on a regular basis.

As a result of my experiences in your hospital, I’ve developed PTSD. I’m currently receiving medication through my primary care physician at your clinic, and receiving psychotherapy through a counselor. Your facility failed to provide me with the care I needed for my daughter’s birth to be a joy instead of a nightmare. Please review your policies to prevent this from happening to another family.

Apparently the letter I sent got buried instead of it being discussed by the hospital staff. I think that someone needs to wake the medical community up. Patients aren’t looking for their doctor to be a benevolent dictator. They want a doctor who is on their team. He guides them in achieving their goals – whether that’s a healthy pregnancy, labor and delivery, or the elimination of chronic pain.

Doctors have an amazing opportunity with pregnant women. They typical woman will have 12 – 15 appointments that the doctor can use to build trust. They can talk to the woman about their treatment philosophy. They can explain the procedures they can expect to perform. These prenatal appointments shouldn’t be an assembly line type of visit. They should have more meat to them than having your weight and blood pressure taken, belly measured, heart beat listened to, and then the big dismissal. They should be talking about the type of experience they typically provide; they should be directing patients to doctor’s whose treatment philosophies more clearly line up with what the patient wants. When complications arise, they should be discussing the impact of the specific complication on the birth experience that the woman may have.

The entire concept of writing a birth plan or taking a childbirth course should become unnecessary. They know what their doctor is going to do, how it’s done, and why they’re doing it. It would give them the opportunity to make an informed decision about who they’re choosing, and build a trusting relationship. When things go wrong, each party to the experience can rely on that strong foundation of trust to help them through. Feeling empowered shouldn’t be based on your ability to control the procedures being performed, it should come from the relationship you have with your caregiver. My trauma wasn’t caused the procedures they performed, but the way they treated me. It was caused by their not involving me in the decisions about my care. It was caused by their failure to tell me that things were going wrong. It was caused by their secretiveness after I started questioning what had happened. It was caused by the way they belittled and trivialized my feelings about the experience. Things happen that are outside of people’s control. Most of the time, birth is safe, but it can go really wrong really fast. Without trust the experience can become incredibly traumatizing.

Today, I read a couple of blogs by women who work in the healthcare industry. The first one was a labor and delivery nurse who feels like she has no control. She has no ability to change the system even though she recognizes the system is screwed up. The second was written by a midwife who believes that the doctors themselves need to initiate the change in how they work. They need to step up to the plate, declare the system dysfunctional, and take matters into their own hands.

As patients, our ability to truly advocate for ourselves is at a disadvantage. We don’t have the 8 years of medical school to back us up. We can’t diagnose ourselves, and we certainly don’t know how to define our own treatment plan. We can yell and scream about intervention rates. We can complain about the procedures, but we cannot change the procedures the doctors perform. We do need healthcare professionals to guide us, but every leader needs a follower. Our role as the patient puts us in the position of being the follower by default. We can’t lead the doctors down a new path. Change has to begin with one doctor who realizes that the system we have is broken, and them deciding to take a new path. It’s their choice to lead others down that same path, and ultimately their decision to train future doctors to walk that same road.

So, what am I going to talk about at this meeting?

Honesty
Communication
Building trust
Getting rid of the “assembly line” mentality
Treating us like patients instead of possible malpractice suits

And not one word about the procedures

Tuesday, August 26, 2008

The first request for help

This is the first version of my peanut's birth story. It’s so weird to read such an emotionless, sanitized version of the story, but it was my first attempt to reach out for help, validation, and understanding. I hadn’t yet asked for and received my medical records, so I didn’t know how serious everything had been. I didn’t really know what had happened, why it had happened, or how it had happened. I knew that it wasn’t “normal”, but that’s the extent of the information I had. The anger and fear hadn’t really sunk in yet, and I hadn’t yet asked for help in coping with the PPD that I thought I had. I hadn’t yet spoken to a counselor, or tried drugs to help with the anxiety. I was so naive.

I posted this on a bulletin board for women who had difficult / traumatic birth experiences. I really didn't know that this happened. I honestly believed that there was no safer choice than having your baby in a hospital with an OB. In all reality, this probably was the safest place for me. The same complications would have existed at home, so location really was immaterial. If we'd transferred from home, it probably would have taken longer to receive a diagnosis. I would have waited for the ER doc to figure out what he needed, and waited for him to call in an OB and anesthesiologist.

I still have a lot of questions. I still struggle with the decisions that were made, but here's the story I knew at the time.


My daughter was born May 11th. I've never told the entire story of her birth to anyone, and until this week I never realized just how bothered I am by how it happened.


I had the easiest pregnancy until I reached my 24th week when I was diagnosed with Gestational Diabetes. Changing my eating habits was very difficult at first, but after a couple of weeks I had it down pat. At 34 weeks I began to experience pregnancy induced hypertension, and my doctor placed me on modified bed rest. By the time I reached 37 weeks it had progressed to pre-eclampsia, so I agreed to be induced the following Friday.


Things started in a pretty typical manner. The doctor broke my water, and they started me on pitocin. However, things started to change rapidly. My blood pressure started climbing, so they had me lay on my left side for what seemed like forever. Things didn't improve, so they tried to roll me over to the other side. However, as soon as I got to my back my blood pressure started to decrease. The contractions started to settle into a steady rhythm, but my blood pressure started to climb again. At this point, my doctor wanted me to have an epidural to reduce the blood pressure, so I complied with his wishes. Unfortunately, the epidural didn't really work. It resulted in slowing labor to a crawl and putting my leg to sleep, but I didn't receive any pain relief from it. Finally, around 9:00 pm I had the urge to push. I pushed for two hours before I came to the realization that after being on bed rest for a month I simply didn't have enough energy to push my peanut out on my own. The nurses finally tracked my doctor down, he wasn't responding to his pager, and he gave me a little help with the vacuum.


My daughter was born at 11:32 pm, but that's the beginning of the story. The placenta didn't detach right away, so the doctor was stitching me up while he gave my uterus time to work on expelling it and the nurses were cleaning up my daughter. At midnight, he once more gave the umbilical cord a tug. I nearly jumped off the bed the pain was so intense. Instead of the placenta detaching, my uterus flipped inside out and started to come out through my cervix. The doctor asked the nurse to call the c-section team. Unfortunately they had all gone home after I had delivered, so they had to be called back to the hospital. I started hemorrhaging and my blood pressure dropped as I started to go into shock. Things get pretty fuzzy about then, but I do remember my doctor once more asking for the c-section team with a hint of panic in his voice. People started streaming into the room, and they rolled me into the operating room.


When I came to, I was back in the delivery room with my husband, and I had the worst case of the shakes. I'm not sure what they were pumping into me at this point. I had one IV line in my hand when my peanut was born, but I had seven lines in my hand when I came to in the delivery room. (I found out later that they had left my husband alone in the delivery room with my daughter, and they didn't tell him what was happening. According to him, the room looked like the nastiest crime scene he'd ever seen on CSI.) At this point, my husband was so overwhelmed that he called a friend to come and sit with me so he could go home, get some sleep,and begin to deal with all of the emotions the day had brung. Finally at 5:00 am I was up to actually holding and naming my daughter. After some time with my peanut, our friend called the grandparents to tell them that my peanut had been born. When the doctor came to do rounds, he told me that he had managed to save my uterus and the placenta had to be manually removed. It turned out that the placenta didn't detach properly, and it came out in twenty pieces. It was also the first time my doctor had experienced a uterine inversion. Apparently it is a very rare complication.


While every decision was made with my and my daughter's best interest in mind, it was an amazingly difficult time. I'm struggling to focus on being grateful that I'm still alive and my body still has all its parts.

An introduction

So, doesn't my title sound dramatic? It definitely matches the drama of my childbirth experience. My peanut was born 15 months, and 15 days ago. Unfortunately I'm still dealing with the PTSD that followed her arrival.

This blog is my space to work through my grief, fear, anger, rage, and questions. I'm hoping that I can find a way to climb out of the hell I've been living in, and make it to solid footing here on earth.

It's also a place to compile all of my writings about the birth trauma. Right now, I have posts scattered across the world-wide web, and this will bring them all under one roof.