Fear of the Unknown
I feel odd starting this blog/journal, as I tend to be a private person and this is something that I haven't even shared with my family to this point. Which is why I am making this page/post private as of today (3/21/2023), although my intention is to one day make it public in case others going through the same thing find it helpful. Google can be a frightening place for those of us seeking information about high-risk pregnancies, especially when your wife is carrying mono/di twins. They are rare, so the available data and information that is out there is limited in scope compared to singleton pregnancies--or at least what I've discovered in my limited desk research.
My wife and I started trying for a child in October 2022, and she discovered she was pregnant in January 2023. When we went in for the 8-week ultrasound, the scan showed that she was carrying mono/di twins. Both of them were the same size and had a heart beat of 147. I was excited, she was scared. It took her a few days to get used to the idea, but I could tell she was at peace with it. It was just the initially shock of it all. My mother-in-law visited shortly thereafter for a week, which was helpful.
From the start, I was reluctant to tell anyone. Given the high-risk nature of these pregnancies, I wanted to temper expectations. So we did not purchase any baby-related items and only told my wife's parents.
Yesterday (3/20/2023) we went in for the 12 week ultrasound, which revealed multiple potential complications. The stress that we have both been feeling over the last 24 hours has been insurmountable. I feel sick to my stomach because there is nothing I can do. Hence, I have decided to start this blog today, as I have learned from people over the years that journaling can be therapeutic. So I hope this helps somehow.
The ultrasound revealed two complications. The first is that neither baby A nor baby B have nasal bones. At this stage of the pregnancy, that means both are at very high risk of Down Syndrome. My (limited) review of the medical literature over the last day shows that failure to identify a nasal bone at this stage of the pregnancy means a chromosomal complication in all but 2% of pregnancies.
To compound this issue, the ultrasound also revealed that the babies are different sizes and baby B has a concerning Nuchal Translucency (NT) measurement. Baby A has a normal NT of 1.5mm, while baby B has a much higher NT of 2.8mm. A brief scan of the literature shows that NIH studies put the normal NT range for babies at this stage at 1.1 - 3.0mm. However, this is not the full story. My discussion with the specialist at the hospital revealed that it is not the NT value on its own, but the NT value in relation to the baby's overall size.
This is where the complication comes in. Baby A is 55mm has a normal NT of 1.5mm, while Baby B is smaller at 47mm and has an NT of 2.8mm. So not only is baby B smaller, but the NT is larger. The larger NT, coupled with the absence of a nasal bone, makes the likelihood of DS or other chromosomal abnormality very high. The doctor therefore recommended we do additional blood tests, which were also conducted yesterday. However, the results will not be available for over two weeks. So now we play the waiting game.
To compound the above NT issues and nasal bone absence, there is also concern over the difference in size between A and B. Since they are identical twins, they should be the same size (or so I've read, I am not a specialist in this area). I did find a few NIH-published studies that showed that higher NT and size differences in mono/di twins increases the likelihood for twin-twin transfusion syndrome (TTTS), which can be fatal for both of them. Therefore, even if by some miracle we beat the odds regarding the issues above, we will still have to monitor for TTTS on a regular basis. The doctor told us that the egg split later than normal, which opens up even higher risk possibilities. He is very concerned about baby B.
It's not the doctors' fault, as they are just giving us the facts/information, but they were very clear with us that our outlook was negative and extremally high risk. And I don't just mean for chromosomal abnormalities--which at this point I think is a given due to the odds--but that they survive and make it to-term.
It's difficult to explain the range of emotions I have felt over the last 24 hours. I'm trying to stay off of the Internet in my search for answers, because it's only making things worse for me mentally. The hardest thing to comes to grips with is that there is nothing we can do--it is all outside our hands. So we just wait and see. Physically, I feel awful. I went out for my normal run yesterday evening to release some stress, and my heart rate was significantly higher than normal. I was also struggling because I wasn't able to keep any food down yesterday. Both mentally and physically I feel terrible. Perhaps I will turn the corner in the future as this news settles in and I come to acceptance, but I have not yet reached that point.
I feel at odds about sharing this information publicly. Perhaps I will keep this blog private for awhile and only post after whatever happens. For now it will serve as a personal emotional outlet and journal.
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