Hi everyone, I just found this board. I don't think it was here when I first found out I was pregnant. Anyway, I recently came back and saw it along with the Pregnancy Loss board which I also need. I'm copying a piece of what I posted there a few days ago to explain my situation:
"I'm 22 weeks along, pregnant with twins. I had my big ultrasound at 19 weeks. We found out that we were having 2 boys, but that one had serious problems. I had an amnio which confirmed what they thought- one of them has Trisomy 13 (an extra 13th chromosome) and that it is fatal. Due to the severity that they currently see, especially with this heart, he was given a 50/50 chance of making it through the pregnancy and is only expected to live up to a few hours after birth if he does make it. Fortunately, our other son is healthy.
We decided to name them since we didn't want everyone calling them 'A' and 'B'. I have appointments weekly for monitoring and basically to see if Elijah's heart is still beating. He's still here, but I know what is coming, just not when. I'm so torn between being destroyed about losing Elijah and happy that Jack is ok.
I feel like I don't belong here because I haven't lost him yet, and don't feel like I belong on the Multiples board because of the situation. I really don't know what to do. I hate the comment- well at least you have one healthy baby. Yes, I'm fortunate for that, but I'm pregnant with TWO. Does he not count just because he's not the only one? I've looked through this board and can't find quite the situation I'm in...."
So- that's my situation. The pregnancy loss board has been very helpful, but I'm also still pregnant with another son that WILL make it so I feel like I can't just dwell on the eventual loss of Elijah. I looked at the 2nd tri board and it just seemed so catty and immature and then I found you guys, which seems like a much better fit. Sorry for the novel!
Re: Introducing myself
Hi ya -
Welcome! Congrats and so sorry at the same time... I know all about the trisomy, I had high risk results for this, and am carrying a single. Fortunately, my amnio came back clear, but i do understand how heart breaking this is.. and the risk to the baby.. I know I can't help, but I'm all ears if you need to talk. I did a lot of research on trisomy and found some really good support sites, if you would like to have them (and haven't found them already?)? Just page me..
I think they want to be supportive, but my guess is that folks don't know what to say other than "at least you have one healthy baby". Of COURSE you're thrilled you have a healthy baby! But- you still have a baby that isn't well and that's heart breaking to deal with. It hasn't happened to me, but i can only imagine what you're dealing with - the conflicting emotions..
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Christine
Wow this has got to be so difficult. I'm sorry this is happening. You are a strong lady. Just do the best you can do in dealing with this heartbreaking situation. My prayers go out to you. I wish you all the best.
Kristin
Wow that is an extremely trying situation for you to be in, I have no advice for you just know that my thoughts are with you as go you through this "bittersweet" time.
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So sorry to hear about Elijah. OMG I feel for you. It must be extrememly hard. You want to enjoy your pregnancy and I'm sure something like this makes it difficult to do that. The only good thing about knowing all this ahead of time is that as much as it hurts now, at least you can be prepared mentally for what is to come.