These Doctors…

As if losing your baby isn’t enough, the last 3+ months have been full of struggles with the OB that I switched to once my husband and I moved. I had only seen Dr. G 4 times before Quinn died and every time someone would ask me how I liked my new doctor I would simply say, she’s alright. Now to be fair, I loved my OB at home. She was phenomenal. The definition of an excellent caregiver and an exemplary physician. I actually called and spoke with her about a week after I got out of the hospital. She told me how she would handle things if I was still in her practice and recommended us meeting with maternal fetal medicine (MFM) to discuss our risks for future pregnancies. I will probably never find a doctor that I liked as much as Dr. D, but that’s neither here nor there.

Dr. G came to visit me in the hospital right before I delivered Quinn. She was kind and understanding, and I appreciated that. As I lay in my hospital bed sobbing to her that I was just in the office the day before and everything was OK, how could this happen, she assured me that she would run every test she could to try to get us answers. Flash forward to 3 weeks later, February 17, when my husband and I went into her office to discuss my placenta pathology and autopsy results. Her demeanor was pretty flat and she led off with what every parent wants to hear (and if you could hear me speak, my voice would be dripping with sarcasm); “your baby was completely normal on autopsy and there were no genetic abnormalities noted.” Great way to start the appointment, she could have told me I was the Queen of England after that and I wouldn’t have heard her. I was too wrapped up in the fact that we lost our perfectly normal baby. She continued, telling me my TORCH titers were negative, I didn’t have listeria or group B strep, etc. Finally she got to it, my placenta pathology came back abnormal. In her words, I clotted my placenta on the fetal side. In actual medical terms I suffered from fetal thrombotic vasculopathy. Once I received all my medical records from the hospital I read the pathology report, multiple acute thrombi noted in the chorionic fetal vasculature and areas of avascular villi were present. The pathologist estimated an “acute demise to delivery” time interval of 6-48 hours.  Weeks later when her autopsy report was actually finalized, it was also noted that she had a thrombus in her main pulmonary artery, I am not sure if this is related to the fetal thrombotic vasculopathy or if it is an incidental finding.

OK, so we have a “reason” why Quinn died in my previously uncomplicated pregnancy. But now I needed to know why I clotted the placenta off. How does that happen? To be fair, I know how it happens, but I have no personal or familial history of clotting disorders or blood clot issues, so I am at a loss. Dr. G said that antiphospholipid syndrome (APS) is the most common cause of miscarriage and pregnancy loss. She told me to get my blood drawn 6 weeks after delivery to check for this. I asked what would happen if my labs were negative for APS and she said then we would consider working me up for other clotting disorders. I had asked if we could meet with MFM since my old OB brought it up and she said that she would consult with them during my next pregnancy. That’s all well and good but I’d really like a plan BEFORE we get pregnant again. I also asked her if I got pregnant again, how she would manage it. Would I have monthly ultrasounds? What about non stress tests? Her answer was, “well I’d do a third trimester ultrasound.” That’s it?!? That is all you would do considering I had an acute late pregnancy loss? At this point, my mind was overloaded and my husband and I left with far more questions than we had when we went in. She said as we were leaving, “I’ll see you for your annual in July. “

March 10, got my labs drawn for APS. All were negative except for one. That result was inconclusive – neither negative nor positive. I messaged Dr. G through my health system’s website and she said she would ask MFM what they thought. A day later a nurse from the office called and said Dr. G wants you to have your blood drawn again in 12 weeks, I hope you know what she wants drawn because she didn’t tell me. Seriously? So again, I messaged her and asked about the time frame and also asked about being tested for other clotting disorders besides APS. She responded by telling me that the other clotting disorders don’t typically cause stillbirths but she will put the order in for me to have them drawn with the rest of my blood work and that was that. It didn’t sit well with me how laissez faire she was being. Her lack of concern for the situation was heightened by the fact that she told me this isn’t the first stillborn case she has dealt with. Well it’s my first, so excuse my alarm. I decided to try and just make an appointment to see MFM and they told me I needed a referral from my physician. I knew that wasn’t happening so I was back to the drawing board as how to proceed.

I finally decided that I would make an appointment with my old doctor for her to consult on the situation. She had cared for me through the 24th week of my pregnancy and had seen me for years prior to that. I saw her April 22. She recommended me to see MFM, just as she had on the phone in February, and told me how she would manage a pregnancy if I was back at her practice. She said she would do monthly growth ultrasounds starting at 24 weeks and weekly non stress tests starting at 32 weeks. She also said she would do anything within reason to make me more at ease during a future pregnancy, up to a scheduled C-section at 39 weeks if I wanted it. We made an appointment to see their MFM physicians in a couple weeks. Of course when I checked with my insurance, the consult isn’t covered so we have to pay for it out of pocket. We don’t care though, after 3 months of being in a cloud of confusion, I would pay almost anything to have someone actually listen to me and hear me out.

I also decided to make an appointment with a hematologist. I realize that may be a little overkill to an outsider, but I need to know I have turned over every stone. If I have to accept that losing Quinn to a clotted placenta was a fluke, I can only do so after knowing that I exhausted every possible test to make sure I don’t have a clotting disorder. Having a clotting disorder, while being bad for me, would at least make it easier for doctors to know how to manage future pregnancies. I would be on a baby aspirin and Lovenox injections. Not having a clotting disorder gets a little dicier. Both Dr. G and Dr. D said they would put me on a baby aspirin regardless, but really, is 81mg of aspirin going to stop this from possibly happening again?

My appointments are next week and the following week respectively. I hope I get some good information from both of them. I know nothing is ever going to calm my fears about the future completely, but I need more than what I have been given so far. I am getting exhausted from constantly trying to advocate for myself and trying to get anyone to listen to me. Is my crazy showing?

6 thoughts on “These Doctors…

  1. You are a nurse. It is in your blood to advocate for patients, only this time the patient is you. You deserve every question answered, no matter how many or how “irrelevant” they may seem. It is so sad that your current doctor is not as supportive as she should be, but I am glad that you have another to reference and use for guidance. Do not ever feel bad for having too many questions, or feeling like you are being too demanding. I think you are an incredibly strong person for standing up for yourself as well as Quinn and any future baby you and Chris may be blessed with.

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  2. I’m so sorry Dr. G has been less than clear and urgent with addressing Quinn’s possible cause of death as well as communicating a solid plan to make you as comfortable as possible in a subsequent pregnancy going forward. I’m glad you’re seeking the opinions of others, including Dr. D. Dr. D’s plan for a hypothetical subsequent pregnancy sounds much more in line with what I’ve heard of others doing in similar situations.

    Is Dr. D far away? If so, I would encourage you to interview others besides Dr. G. It’s not ideal and will take some energy you might not have, but you deserve someone who listens to all of your concerns as well as comes up with a specific plan to address them in order to provide you with the highest comfort level possible moving forward. Anything less is unacceptable, and you are justified in seeking that out until you find someone who meets your needs. Though it’s so unfortunate that, sometimes, we have to look so hard to find it.

    You’re not the least bit crazy, mama. Not at all. Sending you hugs. Nothing about these early days and cause of death investigations and coming up with future plans is easy. xoxo

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    • Dr. D is about 2.5 hours away so I do need to start considering seeking out other doctors in my area. I figure at this point I should go through with my appointment with MFM with my old health system and see what their recommendations are. Once I have that I will be more prepared to know what to ask for. I joke that I know just enough to be dangerous. Yes, I am a nurse, but I am an ICU nurse. OB is a whole different world. We want to be parents but we also want to be realistic with risks and the possibility that this could happen again. Thanks for your words of advice!!

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  3. Had my 6 week post-partum visit today with the OBGYN and got all the results of my bloodwork. (Didn’t realize they’d already automatically run tests for APS and clotting disorders.) It all came back negative. I asked fora referral to a MFM specialist and she put that through today as well- so I should be getting a call to set up an appointment in the next few days. (I had a maternal floor infarction- so also placental clotting, though somewhat different.) I’ve also been told that baby aspirin is in my future- and to even start on it before becoming pregnant again.

    She also seemed receptive to getting a consultation from Dr. Kliman at the Reproductive and Placental Research Unit at Yale School of Medicine. So dropped that paperwork off at her office today. Here’s the info if you’re interested: http://klimanlabs.yale.edu/placenta/pregnancyloss/ I’ve heard positive feedback from other moms who went this route. (I don’t know if you’ve mentioned it before.)

    I want to thank you for the information you’re sharing- it has really helped me to better advocate for myself and to know the right types of things to request/ questions to ask.

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    • I am so glad to hear your provider has been so proactive! Thank you for the information about Yale, I will definitely look into that! I’m anxious for my hematology consult and my MFM appointment. I should also start shopping doctors in my area. I live in an area that happens to be home of a nationally ranked hospital but I have yet to be impressed by it. I’m so glad to have helped you! 🙂

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