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Trisomy diagnosis - I'm at a complete loss
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Anonymous
| Is there anyone out there who has endured a tisomy diagnosis? We just found out that we are faciting a trisomy 18 diagnosis at 18 weeks. I'm 36 years old (but will be 37 at time of delivery). We have a healthy 2 yo, though I have had two other miscarriages; one prior to carrying to full term and one since that pregnancy. I don't even know where to begin with this; I just don't know what to do. If you've endured this, what did you do to cope? Did you talk to others who have also endured this? Solely go with your initial reaction? How did you cope day to day with the depression? This is very early for us and I just don't know what to do. I know I sound like I'm rambling, but I really am having a hard time articulating my state of mind right now. I would appreciate hearing from folks who have been in this same situation. I just can't believe I'm the one in thousands whom this affects; it's hard for me to get my head around this. |
Anonymous
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you are not alone...I too had a T18 diagnosis.
I was fortunate, because I had an early CVS that gave me the diagnosis at around 13 weeks. I don't know how far to go in offering suggestions...my docs spent a long time talking me through the options...and because it was such an early diagnosis, the choice seemed straight forward to us. I hope you have excellent, competent docs that will help guide you through this process... I am so sorry for your news. |
Anonymous
| I'm so, so sorry you are going through this. I don't really have any advice to offer because I have not experienced this. I can only offer my prayers -- and I will pray for you. (Since I don't know you at all, I hope you will forgive me if that comes across as painfully trite or cliche, meaningless to you, or intrusive). |
Anonymous
| Thank you, PP. I realize that this is such a very personal decision for people who have faced this diagnosis, I didn't mean to ask for what decision people made. We do have very good docs and have had detailed convos with them; I guess I still just can't believe this is happening to us. We had decided to forego earlier genetic testing and then we got multiple markers at an early 20-week sono (a bit early based on by OB's recommendation due to foregoing ealier tests). We have a lot of family support, but it is different than someone who has actually experienced this; it feels like no one else has. I appreciate you sharing and your support. |
Anonymous
| Thank you, PP, for your prayers. I don't find it meaningless, the very opposite. Thank you. |
Anonymous
| I haven't been through this, but am friends or know of a number of women who have. And I am so sorry you are joining them - I know it is a heart wrenching experience. My thoughts and prayers are with you as you navigate this journey. |
Anonymous
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I am so hoping this is not a completely stupid thing to do, but I am posting the link below in the sincere hope that it might offer something that is helpful. (It is so unfortunate that some people who really do feel for you and want to "help" can sometimes end up causing more pain because we don't have a clue as to what you are experiencing and how certain things will come across . . .) The link is a short first-person video about a couple who lost their son to Trisomy 18 at three months old. I also feel you should know that the couple in the video is religious and their faith does come up at the end of the video. Understandably, for so many different reasons, this might be the very last thing you want to click on or look at anytime soon -- or ever. I find the video heartbreaking, but also very inspirational. . . But I am not going through the incredible emotions you must be experiencing now and I don't know where you are in the decision-making process.
You sound like a strong and level-headed person even in the midst of the shock you are feeling. I do hope you are able to find the further support you seek from others who have actually experienced what you are going through. http://www.oprah.com/oprahshow/Remembering-Eliot-The-99-Balloons-Video |
Anonymous
| I terminated a pregnancy due to a trisomy last June. It was the worst experience of my life and it took a long time to recover emotionally but it does get better. You should know that you are not alone. There are many couples that have to go through this pain. I feel lucky that we were able to find out early in the pregnancy so that we did not have to endure loosing a child that was born like that couple in the Oprah video. Rely on your support network and take the time and allow yourself to grieve the loss of your child. You will feel better someday. Good luck on this heartbreaking journey. |
Anonymous
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Sorry you are going through this OP. Do you already have a definite diagnosis or just soft markers? I ask because we had a couple of soft markers on our NT plus really bad numbers and we decided on the spot to have a CVS. It was the worst weekend of our lives but it turned out everything was ok.
I am not trying to give you false hope. But I have reread your posting a couple of times and I am not sure if you do have a genetic diagnosis yet. Or maybe you don't even need one.... A big hug to you and your family. |
Anonymous
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I'm so sorry for your situation. Just know that you are not alone in facing a poor prenatal outcome, and that many people have had to go through the same choice, loss, and healing. Friends of mine are part of an online community that you might find helpful, if you decide to terminate the pregnancy: http://www.aheartbreakingchoice.com/; the website lists other resources on their support page.
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Anonymous
PP here: I just wanted to clarify that I mentioned "many people" not to diminish the difficulty, but to say that many of us know someone who's had to face this and are sympathetic to how hard it is and there are many others willing to offer support and sympathy who have gone through it themselves. |
Anonymous
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I'm so sorry for your news. You are not alone. My best friend got the same diagnosis (she was only 25) at the 20 week untrasound. They decided to terminate. Their minister and her family was supportive and provided a lot of comfort by just being "there". It was difficult for everyone but looking back they both say they don't regret their decision.
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Anonymous
| i also had a trisomy 18 diagnosis from cvs and ended up miscarrying soon after. i found the ladies that run http://isaiahspromise.net/ to be a lifesavers. It is run by two wonderful women who both continued pregnancies with fatal problems. Something else you will want to do (and they can help you with it) is to formulate a birth plan. E.g. what actions do you want (or not want) taken at birth. You can arrange to have photos taken. It's such an awful situation and i'm sorry to hear of someone else going through it, but you will get through it. |
Anonymous
| I have nothing concrete to say other than I am so sorry, and that I've been sitting here for a little bit sending you loving thoughts. |
Anonymous
I'm so sorry. The aheartbreakingchoice website & message boards were very helpful to me when I went through the same thing several years ago. In retrospect, I wish I'd gone on the site before we terminated so we would have known more about what to expect and how to deal w/issues like what/how to tell people and what the actual procedure was like. I suspect the website that the other PP mentioned would be helpful if you decide to continue w/the pregnancy. Either way, it will be good to know that you're not alone (you really aren't). Sending you warm wishes to get you through the coming days, weeks, and months. It totally sucks; there is no silver lining. But you will get through it. Hang in there. |