Tough Questions

So my appointment was Tuesday and for the most part, things went well. There were a few tense moments when the nurse couldn’t find heart beat number two. I tried to stay calm as she started scanning my stomach in wide sweeps, but I was secretly worried I would throw up on her. I finally sat up and pointed to the exact point where I thought the baby might be and that’s when she finally heard it.

I was still feeling clammy when the doctor came in to check on me a few minutes later. He measured my uterus and I was measuring about 19 weeks–four weeks ahead of schedule, which normal for twins–small even.

But then came the discussion. In two weeks I have what they call a gross anatomy scan. I never had something like that with my pregnancy with Charlie although it appears to be standard practice in this office. They will look at the gender, but the purpose of the scan is to check for abnormalities.

They’re also going to offer me the triple scan–a test to see whether one or both of my children have Down Syndrome or Spina Bifida.

I’d thought long and hard about it, and had decided there was no need for the triple screen. I’m familiar with both disorders and neither scares me the way that they might have five years ago. My back will probably give out on me if I have to do the wheelchair thing for two kids, but we can cross that bridge when we come to it.

I tried to tell the doctor I didn’t want the test, but he said we could talk about it next time.

I told my husband I didn’t want it, but he thinks it might be a good idea in case we have to make special preparations.

And so I sit undecided. I had the triple screen done for Charlie knowing that children with Spina Bifida do better when delivered by c-section. In the end, I brought home a damaged little boy that no test could have predicted. Would it have been good to know in advance? I don’t know. Maybe.

I’ve got a couple weeks to decide, but would love to know how you guys looks at a test like this–helpful or not?

boy on a swing with one shoe

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  1. Tough questions is right. On one hand like your husband said, you can prepare, but on the other do you really need to know? Will knowing just cause more worry before it’s due? All I can say is pray about it, the answer will come.

    • Ahhhh, yes, Cara, that is one of my favorite problem-solving methods–probably should have thought of it myself.

  2. I did not have the test with Anna or with this pregnancy. With Carly I did have it and got a result indicating she had spina bifida. I was a wreck until we finally got a level 2 ultrasound to prove the test wrong. After that agony I quickly decided I would never put us through that again. And I didn’t. Because you are having twins and because of Charlie I am assuming you will likely have more ultrasounds than the average bear anyway. There are so many more specific markers for Downs and Spina Bifida on ultrasound than that test can even give so the way I see it, if your baby has those things they will likely be caught on ultrasound anyway. That’s just my 2 cents- also coming from a mom who thinks that those diagnosis would have crushed me before but I now see they are not the end of the world, they are still the beginning of a beautiful life. Again, congrats on your pregnancy!

    • Thank you. I am leaning towards this train of thought–if they see something alarming on the ultrasound, we’ll go from there.

  3. I had the test done for both of my pregnancies. Having a serious medical disorder myself, neither disorder particularly scared me…at least in that if our baby had downs syndrome, spina bifida, or one of the other trisomies that the test screened for it wasn’t going to change our mind about having our baby. My husband and I just wanted the time to prepare. Our older son has autism. If there had been a way to prepare for that, we would have taken it. I’m a type A, need to know as much in advance as possible, study out every. little. thing. During pregnancy, I figured as long as the test didn’t have a chance of harming my baby (like CVS or amnio) then I wanted to have it done. However, I have friends who chose otherwise, and there are certainly valid reasons for not getting the test, like it’s apparent high rate of false positive. Just providing my thought process :-)

    • Thank you! Just the kind of thing I’m looking for. I guess I wasn’t really aware of the high rate of false results– might have to investigate that further.

      • My doctors never told me there was a high false positive rate; the accuracy of the test wasn’t discussed. I think it would have been if either of my boys had tested positive. I heard about the high false positives from other women on Twitter.

  4. First, congrats on the babies!!!!!! :)

    I have to say, I think the triple screen is about the most useless test available. At least for DS, the false results are way too high. If you have cystic fibrosis, it is probably a good test. I guess I didn’t realize that it can determine spina bifida – I thought that had to be done via ultrasound. Honestly, most everybody I have ever talked to has had crazy results – either false positives, or a negative result when the baby actually has DS (like us). There are other tests that can tell you better. I guess in the long run, the decision rests on if you have a concern that there may be an issue. If the results wouldn’t change anything for you, I am not sure I would worry about it. Quite honestly, I think if I were in your shoes I would stilol be reeling from the fact that I was carrying twins!!!! :)

    You should do what ever makes YOU the most comfortable. Sending you good thoughts and prayers for an easy pregnancy and delivery, and two happy, healthy babies!!! :)

    Steph and Christopher

    • Ok, definitely hearing from you guys that these results are not the best. I din’t think I’d be worried or upset about the common stuff, but if there was something seriously wrong–like, won’t be born alive wrong– then I might want to know that,

  5. Hey Charlie! Look at that head and neck control. Wow!

    The tests I got I wished I hadn’t gotten. I did get the test for genetic anomolies in my first pregnancy, where the needle goes right through your belly and in to catch a sample. Yowza – left me bleeding a little and feeling spooked. Then when that placenta pooped out early I always wondered if that test was part of the problem. What I regret was wasting my emotional energy on it because I knew then that I wouldn’t terminate a pregnancy unless the result was wholly incompatible with life. I am all pro choice for everybody but me. I had known a woman who pregnant at 43 got a positive DS test and terminated the pregnancy, but I never thought I could or would. I was worried that being an older parent might make it harder to care for a special needs child so I should know and be prepared. Then for baby number two, and now over 40 I just skipped all the bigger testing because my state does that nuchal fold prediction that combined with blood tests is really accurate and that was plenty good enough for me. Nothing that went wrong would have been covered. Hannah’s metabolic disorder that led to the CP would not have showed up unless we were specifically looking for metabolic disorders and no one does that. Like your commenter above says, the triple screen has given people I know a big scare – see if your hospital does the nuchal fold combined with the triple because that really makes the results more accurate. But you know about as many bad things to know about as any one mom should ever know. Shunts? Check. Medication fun? Check. Mobility devices? Check. Lot of therapy? Check. Just stay home and eat some more. The anatomical check is fun if they find all the legs, disconcerting when they don’t, but babies are just kids waiting to grow up and hide from you and it starts now.

    • I’m definitely not interested in more invasive testing–if we got an abnormal result, I’d just have to live with that because I have no desire to have a needle stuck in my uterus.

  6. I think that prenatal testing is a great way to prepare for your baby – and for me personally, I would get EVERY non-invasive test that they offer. We found out about my daughter’s problems when I was still pregnant through prenatal testing. With the downs screening test that you’re talking about, we had a very high risk for DS – (1 in 7) and I actually didn’t freak out as much as I would have thought. I knew that there was still 85% chance that it wasn’t. Turns out that it wasn’t, but it was something else that was evident later on by ultrasound. I’m so thankful that we had the pregnancy to educate ourselves and to prepare for Maddy’s differences.

    That said, I do know for some people, knowledge in advance may NOT be a good thing. But I think you need to a) weigh up whether you would benefit from knowing in advance, and b) know what you would do with that information (it can lead to the harder decision about whether to confirm with invasive tests such as amniocentesis). Ultimately it is just a screening test and will not tell you anything definite, but it can raise red flags. It doesn’t however guarantee a child in “perfect health” but nothing in life is guaranteed anyway!

    I’m so excited for you guys!! xox

    • Nicole:

      With my first pregnancy it was really clear that I needed it because kids with spin a bifid a do better with c-sections. Now, I know I’m having a section so the decision is a little clear. Also, I feel like really big stuff will probably show up on a scan. Smaller stuff might not be worth the angst.

  7. I didn’t bother with the triple screen (here they do that one at 11 – 13 weeks) – I figured that if there was anything huge to “prepare for” (that they can see on an ultrasound… like limb differences or big heart defects) they would see it on my 20 week anatomy ultrasound.
    The reason I didn’t bother was a) we already have a special kiddo, we are cool with another and b) to find out for sure we would have to do the amnio, which I didn’t want to do. And c) I just didn’t see the point for me.
    I did have it done with my daughter (who has autism) and did not feel any more or less comfortable than I did when I didn’t have it with my son.

    • You raise a good point about the amniotic. I know I don’t want that done, so perhaps the triple would just be a waste of time.

  8. Let me just say that as a medical professional the triple/quad screens produce a notorious amount of false positives and therefore leads to needless worry and possibly invasive testing. I did not have the testing done during my pregnancy and my OB didn’t really encourage it, in fact she said only about 50% of her patients opt to have the screening performed.

    • I do love to hear from the professionals! I also wonder if different parts of the country have different testing rates. I felt like this doctor was more in favor than my last. In fact, when I lived in AR, I don’t think I knew anyone who had had it done.

  9. I think the triple screen is a blood test? I got it for my first pregnancy, however was never told it was optional. My second pregnancy with Little Man was obviously different. We found out something was different at 18 wks & at 20 the different became wrong & I was sent to the perinatologist who then told me it was optional. I then opted for every single test they had available at that appt.! I am still shocked at how much blood was taken. I also had the amnio done then too. I figured i wanted to know as much about this baby as I coud so I could prepare myself, my husband, our families & our house. After all those tests the only thing I felt was tired.

    • You see, I’m just not sure how helpful all the tests are. Even if they get SOME sort of result, there’s no telling what your child will be like –it’s still just a guess until they arrive.

  10. I have to add my voice to the “not testing” crowd. Several tests missed our nephew’s Downs (the most positive “test” was a strong feeling by Ashley, oddly enough). Then you have the other side with the crazy number of false positives which will lead to more invasive tests to confirm. As far as being prepared…I *can* see that, but honestly? You’re 1,000x more prepared right now than most mothers would be. I like GingerB’s comment about not wasting your emotional energy on it.

    Also: HOW did you know where the other baby was? You’re so early! And even though you’re feeling already, it’s pretty cool that you can tell that there are 2 distinct bodies in there!

    • I weirdly love stories about people who have “feelings” that end up being reality. I’m such a dork.

      I can’t feel the babies real well when they’re hanging out low in my pelvis, but one had gotten itself up higher and it felt like I had a little rock under my belly button. That’s how I knew where to point. Now, they’re both pretty low and I don’t have a clear idea of where they are.

  11. I’d be torn if I had any more children. I did it with my first two for the extra U/S quite honestly. It was a chance to see the kids before the big anatomy scan at 20 weeks. Here it is done at 11 weeks with 2 blood tests at specific points. I got a false positive for T18 with Owen and was shattered until we discovered he did not have T18, and yet here I sit with Owen having a completely different chromosomal disorder anyway diagnosed at 14 months old.
    Now I sort of think what is the point? You can prep for 2-3 of the millions of possible outcomes? And with the high percentage of false positives, could have weeks of stress and worry for nothing.

    • That’s a good point and I know what you mean– so many things can’t be predicted–why worry about the one or two they can test for?

  12. Okay, so I’m on the fence with this too… seeing that we are pretty much in the same boat right now.

    I opted for no testing in regards to Downs and CF and whatever else it covers. Hubs and I both agreed that what will be, will be and we’ll deal once it’s handed to us. Having one kid with needs really prepares you mentally for another, afterall, what else do we know?

    My anatomy scan will be at 22 weeks, mid March. This is where I sit on the fence. Currently, I am feeling the need to know all that scan can tell me and why I feel differently about this than the other test, I have no idea. Hubs doesn’t want to know a thing aside from gender. Being the medical professional he is, he knows way too much about what an ultrasound could show and says he will probably not even look at the screen. With that said, he said he’ll do whatever I decide in the end. Who knows, nothing showed up to indicate that Oia has Schizencephaly…. ahhhh, just trying to breathe and enjoy this growing belly, no matter what’s going on in there.

    Good luck and peace to you, my friend. None of this is easy but it’s still so amazing and sweet.

    • I definitely want to know what the ultrasound can tell me– but for me that feels like I’m getting to know my child/children.

  13. Oh, I love Charlie and his one shoe!

    I’ve never had children typical or not, but I think that if you have the triple scan and it shows an abnormaility it’ll probably just give you more to worry about over the remainder of your pregnancy. IF you have a child with Downs or spinabifida, what are the chances you’d be bringing him or her directly home? My guess is they’d have at least some hospital time and in that time, preparations can be made if necessary. In the end, though, it’s all up to you and your husband.

    • Good point, Sarah! I’m guessing chances are slim. But, I might want to brace myself for an extended hospital experience. So many things to think about!

  14. Wow – Charlie looks GREAT!!! He has so much CONTROL! I opted not to get the screen with Stephen, mostly because I’m a chicken when it comes to needles, and also, because I wouldn’t abort no matter what. Stephen’s “maybe” issue is a micro-deletion, so it would have never shown up on a screen anyways, so we couldn’t have prepared. And current tests are only 30% accurate anyways. I think if you don’t want to do it, then don’t. There are SO many false positives, it would just cause more stress than a pregnant mama needs.

    • 30%!!!! Wow. That hardly seems worth it.

      • It isn’t. So we didn’t. And it wasn’t covered by insurance. We figured it doesn’t matter right now, really. It won’t change what we are doing for him, so why bother? Plus, we (and his pediatrician) are all on the fence as to whether or not it’s a correct diagnosis anyways, so we’ve kind of adopted the “wait and see” approach, and if we need a blood test in the future, maybe it will be more accurate by then!

  15. 12 years ago, I had a positive AFP test for spina bifida. It turned out to be accurate. The baby had multiple defects and we lost him during the pregnancy. His problems were all seen on ultrasound as well, so the test wasn’t telling us anything we didn’t already know.
    When I was pregnant with my 4 year old son, we were given 1 in 31 chance for DS. And even though he looked fine on the level 2 ultrasound (we declined the amnio because I don’t like the miscarriage risk), I still spent the rest of the pregnancy a nervous wreck.
    When I was pregnant with our 3 year old twins, we declined the testing altogether. I had read somewhere that it is less accurate when you’re carrying more than one baby. And seeing as how that test is notoriously inaccurate anyway, why stress myself out again?
    With this pregnancy, I opted to do the testing… but to be honest, it was really just to get another ultrasound at 12 weeks. I just wanted to see my baby again. If the test had come back positive, I’m not sure I would have freaked out until I knew for sure.
    That’s just our experience. I think it’s a personal choice and you have to do what you feel most comfortable with.

    • Cindy: I am so sorry for your loss.

      I have also read that twins skew the test, which would make an inaccurate test even less accurate. I would hate to worry and plan for something just to find out it was a error.

  16. If you had more information would you do anything differently in the time being?

    • Probably get some books at the library and study up. I’m big on knowledge is power.

      • I realize I didn’t finish my thought, but now I don’t really know where I was going with it. If the majority of the stuff you could find out about can’t be dealt with until after there’s no point in finding out only if it’s going to cause you more stress. That’s not good either.

        • Oh boy I said I wasnt going to give my opinion but here goes… I agree with Sarah!
          Read about having twins that is a lot of information on it’s own…. OH OH you need to get a book on getting them on good sleeping patterns… I got mine too late I had already failed at it LOL!

  17. You know – I did the bloodwork, but ignored the results, because even though they say it can be done for multiples, one baby could be raising the risk level and the other low, and the levels could come out “normal” or they both could be borderline high but normal giving you higher risk, or vice versa. There are just too many variables in a twin pregnancy, so I just ignored it, but did it anyway (not sure why, actually – well, probably because we were dealing with TTTS at the time). So either way you’ll be fine, since you’re getting the u/s, but don’t put too much stock into the results, either way!

    • Another great point, Jenny. With two people in there, there ‘s no telling how that will effect the results.

  18. It’s a tough decision, my first was a 32weeker, and strong as an ox! I had a missed Miscarriage at 16 weeks and my daughter a full termer and my youngest has CP.

    When carrying Oatie, I was bleeding at 24 weeks and told that he just kicked the placenta and I was worrying about nothing, by a highly reputable consultant, in hindsight I should have walked in to the early pregnancy unit and refused to leave till they took me seriously. I love Oatie and he wouldn’t be the wonderful loving gorgeous person that he is today without his CP.

    So I’m not brave enough to go for no.4…yet, always wanted 4. I never liked the sounds of the invasive tests, like ever. So I think you’re amazing and so is your family.

    You have to go with what your instinct says, and by having the test (if you wanted to go for it) won’t mean that you don’t love Charlie any less. What you feel is right for one pregnancy can change each time…

    I think if it was me… I would have the ultrasound, ask them to give the results to my level-headed brained husband (not tell me) who could look and assess the risk without my crazy pregnancy hormones going around and keep me sane from worry as….

    (With my daughter I had a grade 4 (I think) low lying placenta and as I give birth in like 5-10 minutes, I was worried for two trimesters about how she would get out!!! Fortunately I did something very silly, I got every single person I was in touch with, to all at the same time & day (across the world) wish that the placenta would move… well I don’t know if that made a difference but it moved.

    Good luck with that decision and whatever you decide will be right for you and your family.



    • Great story, Mel. Right now I’m leaning heavily towards getting as much information as I can out of ultrasound, and skipping the blood test, which seems to have a lousy reputation.

  19. Gayle Gray says:

    I would have the test. I believe the fewer surprises, the better….Also, if all is well (as it probably will be)…you will have a little more peace of mind…but, of course, you and your husband will make the final decision…..good luck…

    • I definitely have that side to me– the side that likes to know even when it’s not something I want to hear. I do better with Charlie’s diagnosis all the time because we’ve moved from not-knowing to a place where we know him and his limitations. Not ideal for everyone, but good for me

  20. look at that right hand!!!

    • Ahhhh, Evelyn, you notice the little things, don’t you? I actually went back and looked and you’re right– righty is looking good,

  21. There was an article last night on NPR’s “All things Considered” about surgery in-utero for children with spina bifida that was very interesting. Studies are showing that although the risks include death of the fetus and/or the mother, and while the surgery doesn’t “cure” spina bifida, the procedure is producing excellent results. The family interviewed, however, found the abnormality via ultrasound (apparently, very glaring).

    I only mention that because if you did find out the baby has spina bifida there is something you can do for it. But, like someone else mentioned, with twins things are different and surgery most certainly isn’t an option.

    I have opted out of the tests for all of my kids because in my mind, the primary purpose of the tests are to give mothers the option to abort if there is a perceived problem. It is estimated that over 90% of babies thought to have DS are aborted. I have a 12 year old sister with DS and a 5 year old nephew with DS as well. My mother had the triple screen done because it was mandatory in Oregon but she declined to know the results. My sister-in-law did not have the test but was made aware of the great likelihood when other markers surfaced later in the pregnancy. The diagnosis was tough in both cases but I didn’t see any of them more or less prepared than the other. If anything, my sister-in-law seemed crushed twice. Once when the docs told her about the very strong indicators for DS and a second time when , despite all her prayers, her baby was born with DS.

    I have some pretty strong feelings about fetal testing actually. It reeks of eugenics to me. But, enough said. I certainly wouldn’t fault anyone for wanting some additional preparation time and your readers tend to have the same values as I do on the value of every member or potential member of society.

    • Heather, the sadness I have over that DS statistic is overwhelming. Just letting my mind open that box for a second is devastating. I had heard about the spin a bifid a in utero surgery, but you are probably correct in that it would most-likely not be an option with two babies. I think the two babies thing changes things a lot. Even if something is “wrong” with one of them, I couldn’t justify invasive testing that might harm the other.

      • I’m not sure that in utero surgery is not an option for multiples – my favorite PT treats two kids of a set of triplets who have CP, and that mom had in utero surgery with three in there.

  22. I have nothing to add on the question of triple screen other than to echo the fact that it’s inaccurate, and since you’re “in it for the long haul”, probably not worth it.

    I just wanted to tell you how amazing Charlie looks in his pictures lately. I don’t just mean ridiculously cute-which he always has been, but he so seems much engaged in the world since even a few months ago (if the giant smiles, and super-confident, tall sitting are any indication). He’s growing up!

    • Thank you, Danielle! He is growing up. I look at him these days and try to figure out when this boy replaced my baby.

  23. I’m with the hubs on this one. If you can get a heads up as to preparations you might need, why not get it? Then it will be less stressful when the babies arrive. After all, you’ll have Charlie plus two infants! That’s a lot…even without taking into account special needs. Why not be as prepared as possible?

    • Those are good point, of course. I’m not sure if I’m completely willing to go with my brain on this one, though. This might be a “gut” kind of decision.

  24. From what I understand, the triple screen isn’t reliable with multiples. We had it and were freaked out after the our results came back over double what they should be. After research, we learned that twins make the results invalid. I wish I wouldn’t have done the testing.

    • Yes, well, they’re *supposed* to account for the multiples thing, but I’m not exactly sure how they would do that. And as someone else said, with two in there, it’s hard to know what’s really going on.

  25. I never had any of those tests done just because I figured we could deal with it if it happened and I didn’t want extra stress while pregnant. But of course, it’s everyone’s personal decision. I’m sure you’ll make the best one for you…

    • I keep thinking about it. If they could find something definitive, I think I would handle that fine, but from what I’m hearing from everybody here, it’s just one of those test that indicates stuff and you could still have a lot of unknowns. If it’s still going to be unknown, I don’t see the point.

  26. Oh, and I know this is not what you asked about, but given that it’s CHD Awareness week and all that, I really have to recommend asking for a pulse ox test 24-48 hours after birth. The anatomy ultrasound does NOT pick up most congenital heart defects, and the pulse ox will help pick up many that might otherwise go undetected.

    • Lovely tip! Charlie started his chaotic life on the heart floor and we met many a baby who was rushed there after being sent home. Can sometimes take several days before a heart defect makes itself apparent.

  27. That picture of Charlie has me smiling so much… talk about joyful. And he is holding himself up so well I don’t know why but I felt proud. So I am sure you are sure proud of him.

    Honestly your knee jerk reaction was not to have the tests… so I would go with that. Not going to give you my opinion just point out that you should rely on your knee jerk.

    Wow you are having twins… just so you know there were weeks when my doctor couldn’t find the heart beat and my doctor would be like are you feeling movement then we willnot worry. In retrospect maybe my doc was too laid back LOL
    Have a great weekend!

    • Well, I probably WOULD have thrown up on the lady, but I had been feeling movement, so I wasn’t going to completely freak until she gave up.

  28. It’s a tough call. I’m glad that I didn’t have testing with Emmaline because if I had known ahead of time that she had Down syndrome and heart issues, I would have worried myself sick. My sister (who also has a daughter with Ds) decided to have the testing done. It worked out well for her because she is one that needs to research and prepare for things ahead of time. Trust your mommy instincts. I’m not a lot of help, I know!

    • You see, if I knew it was Down Syndrome or Spina Bifida, that would be one thing–it’s the unknown factor that makes me grumpy.

  29. Such a personal decision, my response is jaded by personal experience. We had the nuchal fold measurement at 11 wks (dr didnt tell me she was looking for anything specific) given a 10% chance of survival and presurred to have the CVS as that “held all the answers”. It didnt, was normal, and if it had not been we wouldnt have terminated anyway but once they get you on that testing conveyor belt they dont let you off. Spent the pregnancy VERY stressed, US every 2 weeks sometimes every week, test after test with more normal or inconclusive results. Turns out Ryan is much more delayed than alot of babies with DS and SB and even most of the genetic disorders the nuchal fold is a marker for and at nearly 3 they still dont know why. All those tests they did while I was pregnant didnt bring us any closer to an answer and just stressed everyone out including Ryan. i wonder what effect stress and depression in a mother has on the fetus. I have read reports that depressed mothers are more susceptible to having children with developmental delays. So unless termination is an option, or they are testing for something they can fix (eg a heart condition) or something concrete that you need to be prepared for eg delivery in a level 3 hospital, I wouldnt be letting them near me with a barge pole. Good luck with what you decide, and dont let those drs suck the joy right out of your pregnancy!

    • A story like that makes me think I definitely don’t want to do it. Knowing would be one thing. Not knowing what, but knowing something is wrong would make me bonkers.

  30. My second pregnancy was very closely monitored too because of Owen’s birth defect. I had the level II ultrasound and meeting with a neonatologist. Everything seemed fine, he tried to talk me into it, but I refused the triple screen.

    • I think that’s where I’m at. I’ll get the ultrasound because I want to see the bebes, but I’ll probably skip the screening.

  31. No testing for me :-) Due to all the reasons already given and more.

  32. Don’t over do it with ultra sound.

  33. I agree with pretty much all the other comments I glanced at – I just declined the triple screen for the third time, but I know with having a son with special needs your understanding of these things is deeper than mine – but the triple screen test is notorious for false positives, and I guess I felt like, ‘my ultrasound is in two weeks, and if they’re going to find anything, they’ll find it then.’ That’s just my own experience, but that’s how I feel about it. :) I have heard that there’s a quad screen test that is more reliable than the triple screen – don’t know if your dr. would offer that instead?

  34. We got the test….because it was the only way to get an ultrasound at this point in the pregnancy, and I wanted a picture! This pregnancy is high risk, and I’m 35, so of course they’re all very cautious with everything, but we will decline an amnio if anything comes up, and just get on with the ultrasounds and other monitoring.

  35. Miriam McClure says:

    My daughter has an unbalanced translocation 2q37 deletion and 6q duplication. Extremely rare genetic disorders and no I did not get any special tests before she was born. We didn’t even know what she had until she was 5 and a half. If I was to get pregnant again, would I test? No, I would not. Would it make a difference if the next child had a genetic disorder as well? No. I would still love my child like crazy AND I’d already know what to do! 😛