Testing with second child after first born with special needs — The Bump
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Testing with second child after first born with special needs

I've been thinking a lot about this lately and know it's been discussed several times but I have some specific questions. If you did testing, did you choose the noninvasive blood draw/NT scan or invasive CVS or amnio? What made you choose that specific route? What were the results? If you would rather PM me, that's great... no judgment here AT ALL :)

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Re: Testing with second child after first born with special needs

  • So I have discussing this with my husband about this a lot lately.  I think what we are going to do, is the blood draw/NT scan + a CVS.  My husband and I really want to have the option to terminate (if the results indicated a serious issue) before I look very pregnant (I looked very pregnant by about 16 weeks with my first).  My parents are conservative Catholics and we know that they would not be in favor of termination in any situation, so we would like to be able to avoid telling them I am even pregnant until we are past the CVS.  

    We did no genetic testing with our son, but will be doing genetic testing when we go to Children's to see the developmental pedi in a few weeks.  The results of that genetic testing will help us to make other decisions (testing my husband and myself, and if a heritable genetic issue, then deciding to either not have more children or to do IVF to avoid passing that issue on).

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    Global Developmental Delay consisting of a receptive language delay and self help skills delay

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  • Our first child is typical and our second (on the way) has Down syndrome. We're still pretty sure we want 3but children. I refused all screens and testing with my first, other than the anatomy scan. I declined the early screens this time but had an amnio after my anatomy scan. I'll most likely have the NT scan next time and have a CVS or amnio if our odds are elevated. I am very happy to have a prenatal diagnosis and would want the same if I had to choose again. Good luck!!
    Lauren has Down syndrome and a complete AV canal heart defect
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  • We did CVS with Nate and it did not pick up his micro-deletions. Surprise!

    In hindsight, I am glad I didn't have to make a choice.

    I will probably do CVS again though. I have no idea what the hell I will do if it picks up a trisomy. I don't know if I could mentally handle another SN child, yet the SN child I have is pretty wonderful up to this point.

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  • My first was typical and my second has special needs but is undiagnosed.  All of her testing has come back normal but she has a heart defect, microcephaly and global dev delays.  We did normal testing - NT scan and first tri screen and any new genetic testing that my doc's office normally does.  We also did an echocardiogram to look for the same heart defect.  Since everything came back normal, the doc said it was my decision whether to do an amnio or cvs so I opted not to.
  • Sorry just realized I didn't finish that thought - the testing I'm talking about was for our third child who was born three months ago and so far is typical.
  • My daughter's (and now son) condition is a recessive genetic disorder. It is extremely rare (think less that 100 cases world wide) so we never would have tested for it with her pregnancy - or known that my husband and I are both carriers. My current pregnancy is a complete surprise despite taking proper precautions to not be in this position. We did CVS testing as early as possible (10.5 weeks) but unfortunately had trouble getting a large enough sample so the tissue had to grow for ages. Ultimately, when our son's results came back positive for the same condition, we made the extremely hard decision to proceed forward. I'm glad we know so we can plan (he will require a bone marrow transplant as well) and prepare for his medical care.

    We skipped the NT scan b/c this genetic condition does not have any soft markers. The only way to know is via CVS or amnio. We went with CVS for the sole reason that it can be done much sooner than an amnio.
  • My first born also has special needs my second doesn't but now that I am pregnant with my third we are going to have the noninvasive blood and NT scan between 12-14 weeks. I wouldn't terminate the pregnancy I just want to be somewhat prepared. 

    Having a special needs child has only changed our lives for the better and my husband and I see all children as blessings... Anyways, these tests have high rates of false positives and false negatives. You can end up terminating a perfectly healthy baby, just not worth it in my opinion. Just something to keep in mind.

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  • With both kids I had the blood draw/NT scan as well as the anatomy ultrasound at 20ish weeks.

    I was 37 with my first and 39 with my second.  Both scans for both kids turned up nothing of interest.

    My kids' special needs were/are speech delays.  So far that doesn't show up on any prenatal scan.  Stick out tongue

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  • image Alauren4:

    My first born also has special needs my second doesn't but now that I am pregnant with my third we are going to have the noninvasive blood and NT scan between 12-14 weeks. I wouldn't terminate the pregnancy I just want to be somewhat prepared. 

    Having a special needs child has only changed our lives for the better and my husband and I see all children as blessings... Anyways, these tests have high rates of false positives and false negatives. You can end up terminating a perfectly healthy baby, just not worth it in my opinion. Just something to keep in mind.

    Your information is flat out wrong. CVS and amnio are 99.8% accurate in diagnosing known genetic conditions (like when parents are carriers of something), as well as all trisomies (which covers most major genetic conditions like downs syndrome, T18, etc). So no, people are not terminating based on potentially inaccurate information. Your entire post is so condescending to people who make the extremely hard decision to terminate. I have personally faced that decision and I would never wish it on my worst enemy. It is excruciating and people like you make it taboo and that much harder.
  • ^^^

    I am pretty sure the PP is referencing the NT/blood draw (non invasive) tests that are administered prenatally.  They do have statistically significant false positive/negative results.

    I don't read condescending in the pp's comments.  I get your anger and frustration, but you are taking it out on the wrong person.

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  • image ridesbuttons:

    ^^^

    I am pretty sure the PP is referencing the NT/blood draw (non invasive) tests that are administered prenatally.  They do have statistically significant false positive/negative results.

    I don't read condescending in the pp's comments.  I get your anger and frustration, but you are taking it out on the wrong person.

    She can't possibly be talking about NT screening if she is mentioning termination. While I'm sure it has happened, I'm confident that terminating based on NT findings alone is extremely rare. The normal process is NT results not great, move on to conclusive testing (CVS/amnio), then possible termination. Unless you have received conclusive diagnostic evidence and had to make the decision to terminate or move forward with a special needs child, I don't expect you to understand how condescending her post is. No one that has terminate should ever have to hear someone who hasn't faced the decision say "you may have terminated a perfectly heathly child".
  • We just did an NT scan with Morgan, because no other test would really have showed anything anyway.  Neither did the NT but I was just followed by peri due to Peyton's dx.  Some of which we didn't get until after M was born.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • We had an amnio when the anatomy scan showed that our first, Matthew, had a severe heart defect.  Results came back that he had a micro-deletion, DH and I were then tested to be sure we weren't carriers which we were not.  

    FF to my second pregnancy and we opted for non-invasive testing early on but were clear that if we were even borderline we would then get CVS done and make a decision based on those results.  Termination was always on our list of possibles.  We had already watched one child die from his disorder and just didn't think we could go through it again.  Thankfully everything was perfect from the beginning and even the MFM discouraged invasive testing because she looked so good.  We finally relaxed after her fetal echo (which was the same week as her anatomy scan) and we knew that she was in fact as typical as she could be, which served us well when she arrived 7 weeks early.

    JMA 2/26/09-9/28/09 MMA 11/22/10
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