Tuesday, June 15, 2010

Miscarriage Answers

It has taken me a while to write this post, but that's just because I wanted to be able to inform our families of all this stuff first. So now I think I have also processed things enough after explaining it several times in various formats that I can write something here that is coherent. At least I hope so. Let's see how this goes.

There really is no good news in any of this, but there is news that is better than other news. Plus, there is just the fact that for once we seem to have some answers. If you or anyone you know has ever had a miscarriage you know that answers of any kind are often few and far between. So in a way there is good news here. If you've never experienced a loss, it may be hard to understand how there can be good news; so just keep an open mind as you read.

Most of the answers I currently have are from a follow-up appointment I had last Friday (about four days ago). I have another appointment tomorrow (Wednesday) where I will get some more information. Last Friday we discussed the surgery, what the results of the chromosome tests were, and we learned that we had a baby girl.

So the surgery first. As I've mentioned earlier, the surgery did not go as planned, at all. My doctor told me that she had never had to deal with some of what happened during this particular surgery. I was never in any danger, but things did take much longer than expected. I was apparently intubated twice, there were problems that led her to have to use a scope, and I lost a lot of blood (not so much that there was any concern, but a lot more than would be normally expected). After that whole ordeal I wondered if I would ever do a D&C again, if we were ever in this situation again. I had been unsure about my answer to that, but as I got further in my recovery I felt that yes, I probably would. After discussing the D&C with my doctor I now think I definitely would! She said that with all that went on she feels that had I miscarried at home I probably would have ended up in the emergency room. So thank goodness I was in capable hands from the start.

The most important thing we learned was the results of the chromosome test. I've also done a little (very little) research and I think I can adequately explain this. So everyone has 23 pairs of chromosomes, making 46 individual chromosomes. When a baby is conceived it receives 23 from mom and 23 from dad, usually. A healthy baby girl would have a chromosome structure of 46XX, a baby boy of 46XY. There are often cases where, for a variety of reasons, an extra chromosome gets created or attached or something. Many people are familiar with Down's Syndrome which happens because of an extra 21st chromosome. Down's Syndrome is also known as Trisomy 21. There are many chromosome abnormalities that can happen, with varying degrees of results. There are also lots of names for them, but it seems that the majority of them, where there is a third chromosome in one of the "slots" are called trisomies. Our baby girl had a chromosome structure of 47XX+16. The 47 means she had one extra chromosome (remember you should have 46), the XX indicates that she was a girl, and the 16 is where that extra chromosome is. This is a trisomy called Trisomy 16.

Her chromosome structure also is what gave us confirmation that we had a girl. Because she had this abnormality they could distinguish her chromosomes from mine, thus ruling out maternal contamination. In the beginning I had been told they most likely would only be able to confirm the gender for certain if it was a boy, because he would have a Y chromosome that I don't have. Otherwise, maternal contamination plays a factor. But in our case, they could rule that out.

So what is Trisomy 16? Well, I've only learned a little about it. But so far what I know is that it is possibly the leading cause of miscarriage. Potentially 50% of all miscarriages are a result of Trisomy 16 and some researchers even put that number as high as 75%. As you can see, it is often fatal, and often in the first trimester. However, sometimes it is only present in the placenta and the baby is perfectly healthy. Other times it can be present in the baby but the cells some how correct themselves during the early stages of development, in which case the child can survive. There is a wide variety of possibilities with Trisomy 16 as there are with many other trisomies. And a wide variety of disabilities a child born with Trisomy 16 can have, from very minor to very severe.

There is a support organization I found online for parents of children born with Trisomy 16. They also provide definitions and explanations for the varying ways this can manifest itself. See their website at Disorders of Chromosome 16. I also found this website from about.com on Trisomy 16 very helpful: About.com: Miscarriage-Trisomy 16.

Now the question is: is there any good news in all of this. Well, sort of. If you remember I said we had answers and that was a good thing. The first good thing for me is that I didn't do anything wrong. This sounds weird, I know. We all know that miscarriage is never anyone's fault, but if you've ever had a miscarriage you know that no matter how irrational it seems a small part of you still wants to find something you did wrong. I know I didn't do anything to cause my first miscarriage or to cause my pre-term labor with our second pregnancy, but I still think about it and question it. It's irrational, but it'll probably never go away. This time, I know for certain that nothing I could have done would have saved this baby. She was sick, she had no chance of survival. It's very, very sad, and I miss her, I think I'd have been a wonderful mother and would have rearranged my entire life in order to do what I needed to for a special needs child. But it wasn't meant to be.

The next good thing is that by knowing she was a girl we could give her a name. And by giving her a name we give her an identity. We have named her Brigit Ann. This coming Monday we will be burying her remains during a small burial service. She'll be buried next to big brother Zachary.

Finally, there is the big question of can this happen again. The answer isn't simple. Nothing is. Basically, the risk of chromosomal abnormalities increases with maternal age, but not necessarily because you've had it happen before. It can happen again, but not necessarily. If the same abnormality occurs more than once there could also be a genetic link (and this gets way more complicated than I'm willing to get into here). In my case, as far as I know, this is not the case. Like I said at the beginning of this post, I have another appointment tomorrow and expect to gain some more information from that one, so my answer here could change, but I have a feeling it won't. Basically, recurrence may not be an issue, but you just never know. This could very well have been a random, one-time event.

One thing we did not have on Friday was all the results of the genetic testing. So there is potentially more info to come. At this point though, I am satisfied with the answers I have gotten so far. They are way more than I had with either of the first two losses.

I still wish things had turned out differently, as I do with all my babies. But I take comfort in all the prayers being said for us and for Brigit. I also take comfort in knowing that my babies are now little saints in Heaven, praising God for all eternity, and capable of interceding for us with their prayers. I like to think of Casey, Zachary, and little Brigit together looking down at us from the comfort of Mary's arms.

No comments:

Post a Comment