Friday morning I had an appointment with a new MFM for my fourth opinion on the yay or nay baby thing. I was hoping to go into the appt and get different news. But it was more or less the same "Its reasonable to say you shouldn't have more babies, but its also reasonable to say its worth trying again" Not helpful. What I did like about this doctor though is that she really did her homework, which included sitting in on a meeting with my liver team, a telephone conference between my endo, liver specialist, and OB GYN, and a comprehensive records review. She went through all my OB labs, all the labs I had at Beth Israel and even the labs from the rinky dink community hospital and the hospital I received all my care at for our first pregnancy. I was very surprised at how prepared she was. She also finally gave me an official diagnosis after looking through my labs and discovering that I did in fact have trace protiens in my urine catches early on in both pregnancies and that in both pregnancies I complained about severe headaches right about the same time. They weren't looking for them because I never had high blood pressure. She also pinpointed when my liver began to fail and when the IUGR started. She showed me all the numbers and how my GD masked the onset of Pre-e, which is why I fainted on the insulin and messed my teeth up. And long story short told me that I had suffered from Atypical Delayed Onset HELLP Syndrome. In addition she talked to me about how my FNH could grow in pregnancy and if they reached a certain size I could bleed to death or need and emergency lobal resection (Which carries a 30% fatality rate) And she was very frank when she told me that she could not assure me that I wouldn't die, although there is a great chance that I wouldn't, there are many case studies of mom's with my condition that have died.
She also said that I would need to square with knowing that I could be asked at any point to end the pregnancy and that Phill and I would need to be okay with that. Which I'm not. She did say that the "new viability" measurement is 19weeks. But I'm just not okay with knowing that the risk of having a micro preemie would be greater than 15%. The major bummer was that she told me straight out that I would not be allowed to go beyond 30-32 weeks because the last trimester is when FNH grow the most and when HELLP would kick in. So no matter what we'd have a baby in the NICU. The chances of me having HELLP syndrome again are about is like 20%. And the last bit of knife twist. The strain that a vaginal delivery puts on your liver is too risky, so if I did decide to have another baby, It would be strongly recommended that I have a c-section.
I know there is more, I can't think straight now. Phill and I have had a good cry. We've talked a little about harvesting eggs and sperm and putting some embreyos on ice just in case we ever hit the lottery and can go with a surrogate. But I think we're both knowing that we're going to have to look into some sort of permanant birth control sooner rather than later. Its just depressing.
