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@hilsy85: we were definitely made to feel like false positives are common with the nuchal scan because "the net is cast very wide"

@Torchwood: agree. For some reason I have always had a hyper awareness of many things that can happen medically, but not everyone is wired that way until it happens to them. I think it is great that you so openly and honestly share your story. A lot can be learned from it in regards to the complicated abortion debate, prenatal testing, etc, and your willingness to share has probably been helpful to many.

@Torchwood: I think you don't hear a lot about situations like yours, because 1) they are hard for people who have experienced them to talk about, and 2) they "ruin" the myth that women are walking around 8 months pregnant getting abortions just because they feel like it. It might be a slippery slope to leaning more pro-choice, which obviously some people don't want to encourage.

I agree with everything you've said too in this thread.

@coopsmama: Oh, I absolutely know many of the people who say they wouldn't terminate are saying it on religious grounds. I was raised fundamentalist, so up until a few years ago I would have been one of them. (And even after I became an atheist, it was several more years before I became pro-choice, because babies!) It's just that, as others have pointed out, most people truly don't know what they'd do in that situation, even if they assume they would never terminate. Some could find justification along the lines of what @mrscobee said about God allowing medical interventions. Others would decide that if God didn't like it, they'd do what was best for their child and take the hit themselves. Others would just say screw it and do what they felt was right, and who cares. Etc, etc. My mother was 100% vehemently pro-life... until it was her daughter, and her grandbaby, and she realized that there is so much grey area in this issue. *Many* people have told me they're religious, and had always assumed they would never, ever terminate. But now that they've heard my story, they're not sure anymore. There are those who would stand their ground, but many, many who would not, when push comes to shove. And, of course, as has been said, there is a LOT more to finding out these things than "should I terminate or not."

@yoursilverlining: Oh yeah, nobody wants to think that there might actually be a valid reason why late-term abortions aren't totally selfish. Which is why I talk about it, and have done interviews about it, etc. I don't want people to be able to claim ignorance in their attempts to justify things like 20-week abortion bans.

@Torchwood: I have seen so many people terminate who said that they would never regardless of the circumstance... It's really different when you know your baby is going to be in pain and have no quality of life. I wish more people would speak out to help normalize... but I feel like sometimes people are able to make an exception for themselves but still hold the belief for others. It's kind of unfair.

@blackbird: did you also use midwives? Were you then surprised to learn that the actual rate is very low? Does this change your opinion on them at all (sorry for all the questiosn, just curious! ).

Hugs & to those who did have to make hard decisions when they received their bad news... At whatever point you received it. It's highly personal & your sharing is a gift to others & a great way to honor your babies.

I'm an ama mama & had had a m/c, AND am just someone who's ALL about getting as much info as we could all along the way. As it turns out, having had all the tests & u/s's that we've had have helped ease our worries SEVERAL more times here during our pregnancy when other issues have cropped up (choroid plexus cysts & excess amniotic fluid). In the big picture view, the bulk of info we have on baby girl have allowed us to not worry as much as we may have & just rationally understand the situations. Admittedly, if we knew nothing we'd have coasted on not worrying, either, but we wouldn't have as much knowledge or understanding & calmness about the what ifs. It really just comes down to DH & I being driven to know & understand as much as we can ahead of needing to make any decisions.

This matter is so fresh in my mind given that we just made this difficult decision on Monday. In our case, we had every genetic test and screen under the sun and everything came back fine and clear. It wasn't until we had an early anatomy scan at 17 weeks that any anomalies were picked up.

Our situation was more complicated by the fact that it was a twin pregnancy and we had to make decisions based on what was best for both babies. We chose to terminate because it was very clear that the baby affected was unlikely to have any quality of life whatsoever. This was really driven home for us when we had our fetal MRI and could see that the spine was in 3 separate chunks. I knew in that moment that it would be cruel to continue to prolong the issue.

I had lots of support from the majority of people in my life but of course there was the odd person who questioned our decision suggesting that we wait for a miracle. In my mind, finding out that something was wrong in spite of the other tests not giving any indication was pretty miraculous. The fact that medical advances allowed for us to terminate one and try to save the other is definitely a miracle.
So I feel comfortable with our decision difficult as it was and can say with absolute certainty that I would do it again if I had to and that I really don't believe that anyone can know what choice they would make unless actually faced with the scenario.

@plantains: good for you in picking out the real miracle in this situation. that the other baby grows normally & you can shower him in all your love you'd have given 2.

@Anya: @GoGoSnoGirl: @ChiCalGoBee: thank you. It has been such a help to talk about it here on the bee. I just hope that telling our story can encourage others in the same situation.

@PrincessBaby: I looked up her story, wow! That's probably the most heart-wrenching but beautiful birth stories I have ever read. I was curious though if she had done screen before her daughter was born (it wasn't mentioned anywhere). I mean, obviously, she didn't know her child had DS, but I wonder if they opted out of testing or if the testing missed it? I'm not trying to say that her family's decision would be any different, I'm just curious, considering the topic of this thread.

@looch: our genetic counselor told us that there is a 3% chance of mental handicap issues with every pregnancy, that you simply cannot test for

@looch: yep, that's what we were warned-there's always stuff that you can't test for. Ironically, 3% is often higher than the stuff we CAN test for. Just what it is, I suppose

@hilsy85: no we don't really have midwives in my state! Not the CNMs. I see an OB anyways because of recurrent loss and MTHFR. This was a genetic counselor who told us this, though.

Doesn't change my opinion on the matter, though. My numbers indicated Turners, and with handicaps on both our sides of the family, I'd still opt into the non invasive testing and then proceed from there

Same as previous posters, I wanted to know as much information as possible and be prepared. I'm completely OCD, A-type and would not have handled unexpected news at birth well.

We got prenatal genetic testing and it came back that I am a carrier for Fragile X. Luckily I was barely a carrier (with this genetic disorder how many "repeats" of a certain gene you have correlates with the severity of the disease) and it was very unlikely to mutate further with my offspring. However, it was a really hard decision on whether to do further testing (amnio). My husband did extensive research (he's a physician and has access to academic databases), and we discovered that the probability of the disease being present in our offspring was so low that it wasn't worth the risks associated with an amnio. It caused us a lot of stress, luckily my best friend is a genetic counselor and helped me through this time. We got all possible testing done! We also found out that our son had a single umbilical artery, which on its own means nothing, but with something else wrong could be a soft marker for down syndrome. So of course I got tons MORE testing done. Anyway, I got all of this testing done and the only outcome it changed was that I was monitored more carefully during pregnancy, which allowed me more ultrasounds and peace of mind. If anything had be seriously wrong, we would have terminated the pregnancy. Now that he's here, I'm so glad we got the tests! If I decide to have another kid, I will do the same testing (well, except the genetic testing since it tests MY genes and I already did that!).