Update
Hey,
I’ll preface this email by saying I have some complicated news for everyone today.
Joby and I went to the doctor’s yesterday morning for the ultrasound that would tell us what sexes our babies are (they’re boys – my dream wasn’t completely right!). My appointment started off fairly well, we found out that all of our chromosome screens came back negative, but after a few minutes of the ultrasound I knew something was wrong and asked my doctor what it was. That was the moment we found out that one of our babies had died. I can’t really explain the extreme shock and disbelief that fell over us when the doctor told us this sad news. They think it happened around two weeks ago, near my 17th week. I am 19 weeks now.
Within 45 minutes we were on the way to another hospital (my doctor is at North Florida Regional and we were sent to Shands at UF) to consult with a Perinatologist (an OBGYN who specializes in high risk and multiple gestation pregnancies). While at Shands we had another series of ultrasounds and the doctor was able to get an idea of why one of our twins didn’t make it. There are two reasons, one major reason and one contributor, why our baby didn’t survive. The main reason is that his umbilical cord did not attach to my placenta directly, but rather affixed in the membrane off to the side. That means that there probably was never a really a good flow of blood and nutrients to this baby. This alone might have meant he could never survive to full-term, although we’ll never know that for sure. The other contributing factor is something called Twin to Twin Transfusion Syndrome. This disorder, which only occurs in identical twin pregnancies, is when the babies’ blood supplies b ecome mingled due to a sharing of blood vessels and one baby begins to siphon blood from the other. Our doctor at Shands didn’t see any major signs of TTTS during my ultrasounds, only a mild case of extra fluid around the surviving twin and a mildly larger bladder and thicker heart. He did tell us though that if he plugged in the numbers they would still fall in to “normal” range… which does make us feel better. In most TTTS cases a twin doesn’t die this quickly, but if his supply of blood was already stressed by the umbilical cord position, this might have worsened the situation. Again, we’ll never know for sure. Usually the siphoning or sharing of blood occurs over time and both babies become sick, one fighting hard to handle the extra blood and fluid volume while the other fights to get enough nutrients. Many TTTS twins can survive but often are born prematurely and with complications, and things are often much harder for the “donor” baby. In other cases, parents can lose both babies. For that we do find ourselves fortunate that we can still look forward to bringing one little baby boy in to the world.
Regarding the health of our surviving baby boy… the Perinatologist at Shands is very optimistic that he’ll do fine. The doctor did an extensive (and I mean extensive) screening of him, measuring the blood flow through his umbilical cord, his brain, and all his major veins and arteries. He looked at his heart, all the chambers and valves, and then took a thorough look at his brain to check for any signs of brain damage that might have resulted from his brother’s death and loss of blood due to the sharing of blood vessels. (The equipment he used at Shands showed things in amazing detail and was definitely very high tech.) He could not see any signs that any brain damage occurred and did tell us that if any were to happen, it would have happened already and there is no risk for any further damage. We also learned that at this point in our baby’s brain development he probably would be able to overcome many obstacles since the brain is still forming and growing and is adaptable.
And to make a somewhat light of a terrible situation, we’ll be very happy even if he only gets B’s instead of A’s someday.
Regarding my health… so far both doctors don’t foresee any further risk to me or our living baby with the way things are now. I can continue my activities, as normal, with some minor changes and basically we’ll keep monitoring everything. My blood pressure is good, my health and weight are good and the only thing “wrong” with me is that I am anemic. So I’m on iron supplements which, guess what, can cause nausea (great). I’m going to be seeing a doctor every two weeks to track my progress and our baby’s progress, with visits to both my normal doctor at North Florida Regional and also the Perinatologist at Shands. At this point we really have no idea how long I’ll carry. Our hope is to make it as close to 40 weeks as possible.
We are, of course, completely devastated over losing our baby. It hasn’t really, completely sunk in yet because we have made so many plans for having two come home. It’s a big shock and while I know, intellectually, that there was absolutely nothing we (or the doctors) could have done to prevent or fix this, it still feels like I should have known something was wrong. We are definitely grieving but know that we still have something very special to look forward to. In fact, while we are writing this at 11:30 Wednesday night we just felt our baby boy kick me for the first time. Maybe this is his way of reassuring us that he’s ok. I honestly can’t tell you how happy that makes us right now. If anything can come from this we have learned to appreciate each other, life and our love even more than before. We’re working through everything one hour at a time and eventually we’ll end up ok.
I’m including a picture of our living baby boy on this email so you can see how cute he is growing to be. The other baby boy is not in this picture because we didn’t want to make anyone uncomfortable.
We are also ok about talking to others about everything we’ve written today. If you have questions, feel free to ask - write or call or ask in person. If you don’t, we understand that too. We want people to know about both our baby boys and won’t forget about the one that didn’t survive. I know that some of you already have heard this news and have respected our privacy for a couple days. We appreciate that and all your support. You are welcome to contact us if you want to.
I hope to have good news for you all in the coming weeks and months. We’ll keep you informed.
Love,
Colleen & Joby
