Hematologist, MFM, and a really ridiculous story

I’ll start with the ridiculous story because I find it to be wildly inappropriate and somehow funny all at the same time. I was at my other job yesterday (yes, I am working in 2 separate states. I went back to my old job casually because I really hate my new job). I have this co-worker, she and I haven’t really ever seen eye to eye, but we tolerate each other. Our conversations are generally short and to the point. My first shift back that I worked with her she said, “I know we haven’t always gotten along but I am really sorry about what happened to you.” For me personally, a simple sorry suffices, but whatever toots your horn. So yesterday she starts rattling off to me about how strong I am, etc. When someone tells me how strong I am, my usual response is that I have no other choice. I mean really, what is my other option? Her next line seared through me though. “I am envious of how strong you are.” Now that is a bold statement. Envious. I can assure you, no one is envious of my strength. I know that’s not how she meant it (at least I hope so) but damn. I had to turn around and walk away. It somehow made me chuckle to myself though as I was walking away. I have always said that there isn’t a wrong thing that you can say to someone. Well, I was wrong. You can tell someone you are envious of their strength that they have had to find within because their child died. It rendered me speechless, and trust me that is quite a feat.

Ok, now that the ridiculous story is out of the way, I will recap my appointments over the last week. First, my hematologist. I knew going in that this was me grasping at straws but the doctor was extremely nice. You can tell she really felt for us and what happened. She had said she discussed my case with several of her colleagues to see if anyone else could add anything. Unfortunately, no one had any ideas or suggestions (and most admitted they had never seen a case like mine.) So she went through my workup for clotting disorders, all were negative. A good thing she tells me, I don’t have an inherited or acquired clotting disorder. She suggested just getting my thyroid function checked and that came back normal as well. In her opinion, she recommended a baby aspirin in future pregnancies and said using an injectable blood thinner like Lovenox would not be useful. From a hematologic standpoint, there really wasn’t anything she could do since I don’t have an active issue. We ended the appointment with her telling me to feel free to email her anytime. She may be the only doctor in this “world class health system” that has actually acted with any care or compassion thus far.

Yesterday was also my maternal fetal medicine appointment in my hometown. I went in with some anxiety because I wasn’t sure what was going to be said. The doctor was very nice and I liked her despite the fact that she really belabored how hard having a stillborn is especially not having any other children (I got it, trust me). We jumped right into the autopsy report and placental pathology. She noted that my placenta was extensively clotted. Roughly 75% of the fetal side of the placenta was pale appearing, indicating poor perfusion. She said that it is known that placentas can still function with 50% loss of function so you know my placenta was bad. We discussed the potential causes of this clotting. Obviously, since my thrombophilia workup was negative, we can rule out a clotting disorder as a cause. We discussed my infectious disease workup that was run in the hospital, also all negative – scratch that off the list. It was noted that my amniotic fluid was bloody which could possibly lead someone to think I may have had an abruption but the doctor felt that this was highly unlikely considering I didn’t present to the hospital with cramping or bleeding. It seems likely that this was just an unfortunate event that could have never been predicted prior to it happening. Unfortunately, because there is no clear reason why my placenta clotted, it means I am at higher risk for it happening again.

Now here was the thing she brought up that no one else has. On autopsy, Quinn weighed 1380 grams which is just slightly over 3 pounds. When she was weighed by the nurses, she had a dress and a hat on which falsely led us to believe she was 4lbs 9oz. I knew this because I requested her autopsy report and read it myself. I also knew, being a former neonatal ICU nurse, that 1380 grams is small for a 33-34 weeker. When she plotted Quinn’s weight and gestational age on the growth curve she fell below the 5th percentile. Quinn was definitely growth restricted. What Quinn’s size says is that this placental issue was actually going on for a period of time and was not just a one-time acute event as Dr. G suggested. Unfortunately, had I had an ultrasound at 28 or 32 weeks it could have potentially been caught and the outcome may have been different. The doctor had said that even though I had normal fetal heart tones at my appointment the day before and my pregnancy seemed fine, all was not fine and probably hadn’t been fine for several weeks. Talk about a slap in the face. I had been led to believe all along that we would have never known, etc. Now I have a pretty big bone to pick with the American Congress of Obstetricians and Gynecologists. They do not recommend routine 3rd trimester ultrasounds unless there is a known issue or risk factor. Here’s me in my “normal” first pregnancy, with a normal anatomy scan at 19 weeks and normal appointments. So I don’t get another ultrasound after that. Had I had one entering my 3rd trimester, maybe things would have been different. Obviously we will never know.

We also discussed the clot noted in Quinn’s main pulmonary artery. She had said in her years of practice she had never seen a fetus with a clot in their lungs. Fetal circulation doesn’t work that way. The baby has several shunts that keeps the blood flowing away from the lungs because they don’t use them in utero. She wanted to discuss that with the pathologist she works with closely. She called me back today to tell me they both think the clot was a post mortem change and not present prior to her passing and it certainly didn’t contribute to her passing.

After talking about Quinn’s case and what went wrong, we talked about how a future pregnancy would be managed. She said given Quinn’s growth restriction I would need to be monitored extremely close. She recommended monthly growth ultrasounds starting at 24 weeks and twice weekly non stress tests starting at 32 weeks. She recommended taking a baby aspirin after the first trimester although there is little knowledge if it would actually help in my case. She talked about delivery options and things like that too but we just laughed when I said I’ll worry about that if I ever get to that point. I appreciated that FINALLY someone was as alarmed as Chris and I were that this happened. I also liked that she was so thorough in her explanation. It scared the pants off of me, but at least I was armed with more information.

Needless to say, Dr. G is fired. I have my yearly appointment with a new doctor this summer. Hopefully her and I gel but now I have no problem with moving on if not. I need to be comfortable with them and how they would treat me in a future pregnancy.

Going through my appointment with MFM was tough and definitely ripped a Band-Aid off of a scabbed wound but I feel so much better knowing that there are doctors out there who will take me seriously and manage me appropriately if and when that time comes.

5 thoughts on “Hematologist, MFM, and a really ridiculous story

  1. Oh and the “you are so strong” thing that people say…ugh…I just said to someone today – you’d be strong too if you had no other choice.

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  2. Sorry, my phone freaked out while I was trying to respond to your comment then I deleted it! =( I am glad to hear you got an appointment with MFM. I wish I hadn’t waited 4 months to go. Everything that she said was so different from everyone else in our new city. Your appointment with your OB will help because he/she will give you results, etc. Then you will have time to process that and formulate questions for MFM. And yes, the strong comments, if I could insert an eye roll face here I would. We don’t have a choice. Thinking of you!!

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  3. Hi — did your autopsy or your doctor ever note anything like massive perivillous fibrin deposition or any of these terms: massive chronic intervillositis, chronic hystiocitic intervillositis, villitis of unknown etiology, maternal floor infarction? Your description sounds very similar to what happened in Luke’s pregnancy — if it’s the same thing I can hook you up with some info about treatment options.

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    • I had to check my placental path report but, no, it didn’t note any of that. I had focal avascular villi, multiple stem villous thrombi, multiple recent thrombi of the chorionic plate vessels, and vascular karyorrhexis. All consistent with fetal thrombotic vasculopathy and all noted on the fetal side of the placenta. I would still be interested in the things you have been told!

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