I received the results from my OB/GYN at my regularly scheduled appointment. She happened to have received the fax before anyone could contact my Perinatologist, who was out of the office. I had expected to hear from someone in the afternoon, but wasn't expecting my OB to be the one with the information. So when she asked me how I was feeling, I told her the truth--I am mentally screwed up right now. She assumed I had heared the results. Nope, just the state of mind I've been in, but hey let's hear those results. Well, she had never actually seen these type of results. One page for twin A showed normal chromosomes, and listed the baby as female. Flip to the next page for twin B and it was blank, except for a disclaimer reading that only 1% of analysis comes back inconclusive, which of course was the case for twin B.
After a few phone calls to the genetics lab and the Peri office, we discovered that they couldn't produce the results for twin B because these types of results just don't happen. It's the assumption that identical twins are identical--if one twin is "normal" then in theory the other twin is as well. This isn't the case here, so a human had to re-evaluate the results. During cell division, twin A was spared the "bad" chromosome resulting in an unequal cell division. Twin B is diagnosed with Turner's Syndrome. It's only associated with females. The abnormality itself is quite unnoticeable in society, and most women go on to lead normal lives. In this case, the syndrome is presenting so severely that it's the cystic hygroma and fluid buildup around her heart, lungs and stomach (hydrops) that it's crushing her internal organs. If the cystic hygroma were smaller, and little to no hydrops were present, the odds are that she would survive. However, I've been told it's only a matter of time that the continual increase in pressure will shut down her heart.
The Peri called me immediately following my appointment with my OB, and informed me that he had already been on the phone with Cincinnati regarding my results. Typical Turner's Syndrome diagnosis is reviewed by an ethics committee to determine termination status. In this case, all specialists agree that it's not an ethical issue (medically speaking) and that my best bet, and twin A's best chance at survival, is to get to Cincinnati ASAP. Cincinnati called me shortly after the conversation with my Peri and had me registered at their hospital with an ultrasound scheduled for this Mon. These conversations all took place driving from the OB office to the freeway, which is about a 10 minute drive.
It's a lot to digest and I find that I can't breathe if I have to think about it too much. I do know that the specialist there will look at specifics of the ultrasounds and make his own determination. I know if I were rational and not thinking from a maternal pregnant, oh god please just save this baby and give me a miracle point of view, I would see this as others do. Maybe sleep will give me some perspective. Right now I just don't know how I will ever recover from making an impossible decision. The odds of twin B dying in utero is great, the odds of survival to birth is low. The odds of twin A having side effects (cerebal palsy or brain defect, etc.) if twin B dies in utero is high, very high. The odds that I will have a "normal" pregnancy after going through the procedure to do ablation on twin B is very high. Still with all this information and all the doctors and specialists on the same page in this, I have a huge moral hurdle that I can't even fathom I am faced with.
2 comments:
Oh Cara, I'm so sorry you're going through this. I can't even imagine how hard this must be. You're always in my thoughts. Love you.
I read this Saturday am because I thought I was up early and then on the computer before 7 am. But you posted at 3:39 am! Not sleeping at all, eh? Wow, Cara. I'm sorry this is all so difficult. I can hardly wait to talk to you and see you. Heidi
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