https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Thu, 09 Apr 2026 14:38:14 +0000 https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2174077 Mon, 11 May 2015 10:15:16 +0000 renee 2174077@https://boards.hellobee.com/ <p>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!). </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2174053 Mon, 11 May 2015 09:58:42 +0000 edelweiss 2174053@https://boards.hellobee.com/ <p>@mrsrugbee: thanks for your honesty. i think a lot of people are scared to say this. i feel the same way you do. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173902 Mon, 11 May 2015 08:21:20 +0000 mrsjyw 2173902@https://boards.hellobee.com/ <p>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. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173878 Mon, 11 May 2015 08:07:35 +0000 LulaBee 2173878@https://boards.hellobee.com/ <p>I opted to not do testing with my daughter (now 2.5). Since her birth (she was very healthy), I have had a miscarriage and a stillbirth, and been diagnosed with a blood clotting disorder. I'm 10 weeks pregnant now and definitely am doing all the testing. I feel like I was very naïve with my daughter, and now I know how horribly things can go... we want to be as informed as possible, and will terminate if this baby will have no quality of life. It's hard to think about that, given that this is our last one. Hugs to all of the loss mamas on this board. :heart: </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173808 Mon, 11 May 2015 07:14:24 +0000 blackbird 2173808@https://boards.hellobee.com/ <p>@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. </p> <p>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 </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173807 Mon, 11 May 2015 07:12:24 +0000 mrscobee 2173807@https://boards.hellobee.com/ <p>@looch: I thought about that a lot but ultimately decided it wasn't a reason for me to ignore the testing that was available. But I agree that no matter what testing you get, something could still be wrong, in which case I would still love my child. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173805 Mon, 11 May 2015 07:10:13 +0000 blackbird 2173805@https://boards.hellobee.com/ <p>@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 </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173803 Mon, 11 May 2015 07:08:08 +0000 looch 2173803@https://boards.hellobee.com/ <p>@blackbird: I wasn't aware of that statistic, but my point was simply that sometimes you can do all the testing available to you and still have a child with a profound handicap. </p> <p>My brother is one of them. Granted, he's in his 30s now do there is a lot more available now, but he has been tested and there is no genetic evidence/explanation. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173782 Mon, 11 May 2015 06:31:54 +0000 blackbird 2173782@https://boards.hellobee.com/ <p>@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 </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173775 Mon, 11 May 2015 05:41:08 +0000 looch 2173775@https://boards.hellobee.com/ <p>In fairness though, sometimes children are born and the issues present themselves later. Take autism, for example. </p> <p>I am absolutely not passing judgement on anyone for any decision that they make. We are all individuals and we can all handle different levels of things, there is no reason to be absolute in my mind. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173758 Mon, 11 May 2015 01:52:02 +0000 lamariniere 2173758@https://boards.hellobee.com/ <p>@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. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173167 Sat, 09 May 2015 22:14:47 +0000 PrincessBaby 2173167@https://boards.hellobee.com/ <p>I did because I just didn't want that shock at delivery, if something was wrong. I wanted time to prepare and obviously have the best medical care on hand. </p> <p>My 2nd lo came early and SO FAST. It was so surreal when they handed her to me after 2 pushes, I had a hard time really believing she was mine, it was just so unbelievable. I can't explain it. It was like it was all so fast, my brain just wasn't on board and it took a little while for me to get on board - this happened and this is my baby. It was almost too shocking for me to process it, if that makes any sense.</p> <p> I can't imagine what it's like to deliver and find out that your baby has a lifelong issue or medical condition. That would be shocking and devastating at the same time, and I'm sure would just totally overwhelm.</p> <p>I always think of those pics of Kelle Hamilton when she delivered her DS daughter. The shock and the feeling that something was wrong was evident on her face. I'm sure that is SO HARD to process when you've just went through L&amp;D. I would rather be prepared. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173162 Sat, 09 May 2015 22:02:30 +0000 plantains 2173162@https://boards.hellobee.com/ <p>@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. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173065 Sat, 09 May 2015 19:49:03 +0000 ChiCalGoBee 2173065@https://boards.hellobee.com/ <p>@plantains: Beautifully stated during such a hard time in your life. Sending love and light to you after having gone through something so horrible. :heart: </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173058 Sat, 09 May 2015 19:36:06 +0000 GoGoSnoGirl 2173058@https://boards.hellobee.com/ <p>@plantains: :heart: good for you in picking out the real miracle in this situation. :goodluck: that the other baby grows normally &amp; you can shower him in all your love you'd have given 2. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173023 Sat, 09 May 2015 19:00:15 +0000 Anya 2173023@https://boards.hellobee.com/ <p>@plantains: that was so wonderfully articulated. :heart: </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2173010 Sat, 09 May 2015 18:37:59 +0000 plantains 2173010@https://boards.hellobee.com/ <p>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.</p> <p>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.</p> <p>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.<br /> 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. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172967 Sat, 09 May 2015 16:51:42 +0000 BandDmommy 2172967@https://boards.hellobee.com/ <p>Same as mentioned above. If i was to have a severely handicapped child I would need time to prepare. And for those that say they are low risk and they couldn't have a child with special needs, that's not true. That's just being naïve . </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172950 Sat, 09 May 2015 15:47:09 +0000 GoGoSnoGirl 2172950@https://boards.hellobee.com/ <p>Hugs &amp; :heart: 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 &amp; your sharing is a gift to others &amp; a great way to honor your babies. :heart: :heart: </p> <p>I'm an ama mama &amp; 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 &amp; 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 &amp; 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 &amp; 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 &amp; calmness about the what ifs. It really just comes down to DH &amp; I being driven to know &amp; understand as much as we can ahead of needing to make any decisions. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172527 Fri, 08 May 2015 20:59:53 +0000 delight 2172527@https://boards.hellobee.com/ <p>This thread hits so close to home. I am not sure I ever was one of those people that said "I would never terminate" but sadly am among the ranks of those that did. It was the hardest decision of our lives but it was based on so many factors and it is not something I regret. It's more that I feel sorry for myself for having to be faced with the circumstances. At any rate, I will have testing next time and have it much earlier. I wish I had found out way before 20 weeks that there was a chromosomal problem.<br /> @thisgirl: I'm so sorry for your loss. Our little girl had TS too.<br /> @Torchwood: :heart: Just wanted to say you were a big support to me when we went through our Tx. Thank you. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172511 Fri, 08 May 2015 20:37:04 +0000 hilsy85 2172511@https://boards.hellobee.com/ <p>@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! :) ). </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172380 Fri, 08 May 2015 17:26:14 +0000 mrsrugbee 2172380@https://boards.hellobee.com/ <p>Because depending on the problem, I would heavily consider terminating the pregnancy. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172376 Fri, 08 May 2015 17:24:17 +0000 Mrs. Jacks 2172376@https://boards.hellobee.com/ <p>@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. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172363 Fri, 08 May 2015 16:58:24 +0000 thisgirl 2172363@https://boards.hellobee.com/ <p>Definitely to be prepared. I found out I miscarried at 21 weeks when I went in for my ultrasound. We opted not to do genetic testing and how I wish I could go back in time and get it done. At least I would have been aware of it. Here I am, going in with my husband and sister to find out the sex. My family and friends, in anticipation, and having to break the news she didn't make it. She had Turner's Syndrome.</p> <p>This time around I'm DEFINITELY getting it done. Regardless, pregnancy innocence is gone but at least I'll have an idea of what to prepare for. You will never be 100% sure with getting tested but I'll definitely have a much better peace of mind knowing. Good or bad. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172319 Fri, 08 May 2015 15:47:59 +0000 Torchwood 2172319@https://boards.hellobee.com/ <p>@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."</p> <p>@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. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172309 Fri, 08 May 2015 15:37:43 +0000 Ginabean3 2172309@https://boards.hellobee.com/ <p>We did testing because like everyone else...we wanted the knowledge. I'm also a high anxiety person to begin with so the thought of going through nine months and not knowing if everything was ok would have driven me over the edge! </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172298 Fri, 08 May 2015 15:27:27 +0000 yoursilverlining 2172298@https://boards.hellobee.com/ <p>@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. </p> <p>I agree with everything you've said too in this thread. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172296 Fri, 08 May 2015 15:25:18 +0000 mrscobee 2172296@https://boards.hellobee.com/ <p>@coopsmama: true, and as someone who believes in God I can appreciate that for sure, but I also think there are some situations that lend themselves to really not knowing what you would do until you are in them because they are just so complex. I thought a lot about this before doing the panorama test (what I would do if it came back not okay). I ultimately decided that if something came back bad enough or put my own health in jeopardy (a number of the issues could) then there are situations I would terminate despite my Christian faith. I think with a lot of medical issues it can be argued that God has allowed for these medical interventions in this world, so it isn't too far fetched for there to be situations in which they are necessary, but it is definitely super complicated. </p> <p>Plus as others have mentioned, genetic testing is not just about termination. It is about knowledge being power and possibly getting the best care for your little one. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172293 Fri, 08 May 2015 15:22:46 +0000 Truth Bombs 2172293@https://boards.hellobee.com/ <p>@coopsmama: First of all, I assure you many people have said "I would never terminate a pregnancy" based on beliefs religious or not, and have eventually ended up in a situation where their beliefs have changed. Secondly, I think as many people have said, even if they truly would never terminate a pregnancy under any circumstances (even circumstances where it is most definitely in the best interest of the child), there are benefits to knowing what to expect. I think those are the points that were being made. Not that everyone would terminate with a given set of circumstances. </p> https://boards.hellobee.com/topic/why-did-you-choose-to-do-pre-natal-genetic-testing/page/2#post-2172292 Fri, 08 May 2015 15:22:09 +0000 Charm54 2172292@https://boards.hellobee.com/ <p>We chose to have to done because I would want lots of time to prepare if I was going to be delivering a child with special needs. </p>