has anyone on here terminated due to a positive T21 result?
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Anonymous
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I just got my first trimester screening back, and my chances for a baby with Down Syndrome are 1:50 (I am 32). I went in yesterday for the materniT21 test, and will have to wait a week or so before I know the results. This is weighing heavy on my heart as I don't know what DH and I will decide if the test comes back positive. This is baby #2 for us, and we got pregnant on the first try. Older DC is not yet 2. Having a DS baby will be incredibly challenging due to so many factors; DC #1's young age/dependence on us, DH's massive anxiety for which he refuses medication (but he is in CBT), the fact that I suffered with PPD with DC #1 and am concerned it will happen again, and of course just the "regular" challenge of raising a DS child. I am pro-choice but anti-abortion for myself (as well as a pretty lapsed Catholic-but oh that early training remains!), but since I have gotten the news, I find myself pondering termination.
On the other hand, a (large) part of me shrinks away from this thought in horror. Everyone has a different definition of life; mine is, and has been firmly since I was pregnant with DC #1, that once I see a heartbeat and the baby is moving around, that baby is alive. I'm sure others would disagree, but to ME, I have a living being in me right now, and the thought of killing it just because it would make my life difficult is repellent to me. But the thought remains... I am reaching out to moms who have terminated due to a positive DS result. I would very much like to hear how you arrived at your decision. Were your thoughts similar to mine? Was there never a second of doubt? How bad was your emotional "fallout" afterwards? Again, everyone is different, and I will not judge-my feelings are my own, and I only mentioned them earlier so posters could see what I was struggling with, not as a standard to which I think everyone must be held. Thank you for your thoughts. |
Anonymous
| I am sorry you are dealing with this. I've never been in your shoes, but I wonder if it might be best to try not to agonize over this until you get the results. |
Anonymous
For me, once I see a heartbeat and the FETUS is moving around, that FETUS is a living parasite. I don't mean parasite in a gross way, but that's what a fetus is. It is living off of another living thing, and can't live independently. I terminated. Aborted. Whatever you want to call it. I don't feel badly about the decision at all. We also have a first child, and one of the things we had to think about was how it would impact him. I reached out to a girl I grew up with whose sister has Downs, and asked her about her experience growing up, and now with her, as adults. Obviously, she loves her sister very much. But what she described to me is not what I want for the child we already have. Her parents separated for a few years from the stress. She was teased relentlessly (which I found interesting because I remember her sister and remember everyone standing up for her and being kind to her). She didn't get much attention from her parents, who had to give so much attention to the other daughter. We thought about what kind of couple we are, what kind of family we're trying to create, how comfortable we are bending that, how well a baby/child/teen with Downs would fit in, how much patience we have, etc. We thought about the very real possibility of having to care for this child well into their adult years, about the burden of caring for him/her falling to our older child. We made the right decision for us. I don't think anyone who chooses to keep a fetus that may have DS is making the wrong decision. It just has to be the right decision for you. |
Anonymous
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I am so sorry that you are going through this.
I thought I'd share a blog in case you haven't heard of this one before. The young mother's second child has DS and she had no idea until she gave birth. It's a very inspiring and loving blog. I don't have a child with DS but I find this blog wonderful to follow and makes me want to be a better mother. Good luck to you  .
http://www.kellehampton.com |
Anonymous
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I'm very sorry you are going through this. We have one special needs child and I knew if we were to have another, I was very ready to terminate the pregnancy. The stress would have been too much on everyone involved. And many marriages of special needs parents end in divorce.
However, that doesn't mean it would be the right decision for you. Have you thought about adoption? One of the best true life accounts of raising a child with DS is Expecting Adam. http://marthabeck.com/product/expecting-adam-a-true-story-of-birth-rebirth-and-everyday-magic/ it might be worth a read. |
Anonymous
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I'm sorry you are dealing with this. We received similar news 19 years ago. We were told that my daughter had Trisomy 18 and that it was incompatible with life beyond the first few years. I am also pro-choice but very much personally against abortion. In the week between the initial diagnosis and further testing, I agonized over what we would do. It was the hardest period of my life.
We got good news. My daughter is perfectly healthy. I'm not 100% positive what our decision would have been. I was leaning towards keeping the baby and my husband was in favor of ending the pregnancy. Whatever you decide will be painful. Reach out to those who have been there. Don't let anyone tell you that there is a right or wrong answer. Unless they've been where you are, they have no idea what they would do. I will say a prayer for you. |
Anonymous
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OP, I have a sibling with special needs. It's not downs. But he will need to be taken care of for the rest of his life. The financial models expect him to live to be 75. He will outlive my parents and will even outlive ME. (I am significantly older).
This is a terrible burden on my parents, who have had to scrimp and save and plan to ensure that there are funds to care for him. It will be a burden on my siblings too. Until you have lived it, you cannot even imagine the ways in which this responsibility has taken over their lives and, to be honest, destroyed their happiness, although they would never admit that out loud. I personally would not have a child with serious special needs. I had the tests with my last pregnancy because I was over 35. I knew when I went for the tests that if there was anything significantly wrong, I would terminate. I have seen first hand what life is like for the child, the parents, the marriage, and the family of a seriously SN child and I know it is not a life I would wish on anyone. How "serious" downs is, and how serious it is in this case, I don't know. But the best of luck to you with whatever you choose to do. |
Anonymous
Kelle Hampton sees everything through rainbow and glitter sunglasses. http://getoffmyinternets.net/gomi-forum/mommy-bloggers/small-kelle-hampton-snark/ |
Anonymous
I know you mean well, but Kelle does not give a realistic portrayal of life with a child with DS. She gives no insight into what they've had to do to get her therapy, any milestones she's missed or been delayed on, etc. etc. Her child appears to be thriving with minimal negative side effects of having DS, but that is not the case for all children with DS. I have a family member whose son has DS and it has been lots of heart surgeries, many, many delayed milestones, and a fight to get certain therapies. I don't have an opinion one way or another if OP should terminate as I do not know the full story of her life or capabilities, but I do not think Kelle is the direction one needs to go when trying to make a tough decision like this. It shows but ONE possibility of what life could be like, and Nella is only 3- who knows what lies ahead. |
Anonymous
| Is materniT21 diagnostic or just give you odds again. I would think you would need a CVS or amino so you know definitely what you are dealing with and can make a decision with all the relevant information. |
Anonymous
They call it a screening test, but it gives you a positive or negative, and from what I understand it is quite accurate -- much more so than the nuchal screening. It's not quite as accurate as a CVS or amnio, though, but the problem with that is that OP may be past the window for CVS and not quite in the window for amnio, and then have to wait another 2 weeks for results. I know of people who did not receive amnio results until 19-20 weeks. Termination is a much harder decision at that point, even for those of us who are pro choice. |
Anonymous
| For Down's, Maternit21 is 100% specific and sensitive. |
Anonymous
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OP I am so sorry you are going through this. We got some bad news with our first pregnancy and until the second test came back (which was fine) I was a wreck.
The screening is just a screening and although 1:50 is a high risk it is still far far from positive. Wait for the T21 results (when do you expect them back?) and they I would advocate to have an invasive test(CVS) done if it is positive then sit and weigh your options. Unlike the PP whose friends family was torn up by Downs, my friends family is wonderful with their Downs sibling. He is high functioning. He is a joy and full of love. For my husband and I we would not have terminated for Downs. we would have terminated for Trisomony 18 or anything that was incompatible with life. That was us. I personally have the same viewpoints you do on life and I would not have been able to live with myself. My stance is stronger since actually having children and knowing just how precious they are and how precious their lives are. I am praying that everything will be fine for you. And I am sorry for this stress in what should be a happy time. Please keep us posted. |
Anonymous
It's such a new test that if it says, "yes, Down Syndrome," I would probably have the CVS or amnio also. But, if it said "no Down Syndrome," I would believe it and wait for the anatomy scan at 18-20 weeks to see if anything else concerning popped up. |
Anonymous
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My mom's youngest sister was born with DS. In an era when all SN kids were institutionalized, her parents took a principled stand and kept her at home. My aunt has certainly lived a full and valuable life, but she's also vastly outlived her expected span of years and is finally, at 60-something, in a hospital and quickly failing. My elderly mom and her sisters are working around the clock to provide the additional care my aunt needs because hospitals aren't equipped to help, and the medical community knows little about aging in people with DS.
Seeing firsthand what toll that takes on my mom and her sisters, it's tough. On one hand, I love my aunt dearly -- she's witty and warm and played a huge role in my own childhood -- and my mom feels the same way, obviously. On the other, especially because we wouldn't have more than 2 kids, I'd be reluctant to place that burden on my DD. I haven't been in your shoes, but like a PP, my DH also has some mental health issues. The truth is that I'd likely terminate. |