Can intellectual disabilities be detected in utero?

SeaSoul · July 2011

I just passed a child on the street was was obviously several intellectually & physically disabled. He was probably 8-10 and was being pushed in a stroller...I don't think he had CP, I think it was even more serious. I grew up with a boy who had similar issues (but I would say worse) - he could barely communicate at all, had to wear a helmet, walked with great difficulty.

Being pregnant, I couldn't help but wonder if it's possible our baby has these disabilities, and we won't know until after birth. I know some are caused during childbirth or later in life after an illness, etc. But for those babies that are born with such disabilities, are they are to be detected via ultrasound? I can't imagine anything more devastating, other than a fatality, or near-fatality.

naflmj · July 2011

I don't know. I have a few kids on my caseload that were "typically" developing until between 4-12 months old and had a seisure or the like and now have severe disabilities and health complications.

CandT · July 2011

Specific disabilities such as down syndrome can be detected and we know that ID (intellectual disability) is part of that disability. However, ID in general cannot be detected, there are so many prenatal, perinatal, and postnatal causes. A person can also have an ID with no physical implications at all. There is a wide range of ID mild to severe and characteristics of this disability can show up as early as birth, or much later in life (more mild cases, usually around school age).

SeaSoul · July 2011

Thanks for the info, guys. It's so hard to think about...

ABC-123 · July 2011

What can be found are markers for other disorders/issues that have intellectual disabilities as part of the disorder. I don't think the actual intellectual disorder can be determined, nor the severity. I do think that you can subjectively have an idea of how severe a disorder may be depending on the severity and/or number of markers that are found, however, that is just my thought and I don't know if there is any medical basis to it...

ETA: Sorry, I missed a portion of your post, so I wanted to respond to it also.

My DD was diagnosed with Trisomy 21 a few weeks ago; it was not detected during any of the prenatal screening tests or ultrasounds. She has Mosaicism so it is hopeful that she will have a milder case than the traditional Down Syndrome, however, it is impossible to know how it will effect her until she grows, verbalizes, etc.

I do (or did) have many of the same worries that you mentioned. Will she walk? Will she talk? Will she always live at home? etc... The worries are endless, however, with some education and time I have come to believe that she will achieve most things that typically developing children do. She will talk and she will walk, but she will do them on her own timeline. I don't know what the future holds for her, but I guess we don't know what the future holds for any of our children. What I am learning is to be happy with my life today and be happy with the blessings that we do have. It has been difficult for me to change how I think, but in a way it is freeing.

I am not sure if this has helped you in any way. I hope so.

SeaSoul · July 2011

ABC-123:
What can be found are markers for other disorders/issues that have intellectual disabilities as part of the disorder. I don't think the actual intellectual disorder can be determined, nor the severity. I do think that you can subjectively have an idea of how severe a disorder may be depending on the severity and/or number of markers that are found, however, that is just my thought and I don't know if there is any medical basis to it...
ETA: Sorry, I missed a portion of your post, so I wanted to respond to it also.
My DD was diagnosed with Trisomy 21 a few weeks ago; it was not detected during any of the prenatal screening tests or ultrasounds. She has Mosaicism so it is hopeful that she will have a milder case than the traditional Down Syndrome, however, it is impossible to know how it will effect her until she grows, verbalizes, etc.
I do (or did) have many of the same worries that you mentioned. Will she walk? Will she talk? Will she always live at home? etc... The worries are endless, however, with some education and time I have come to believe that she will achieve most things that typically developing children do. She will talk and she will walk, but she will do them on her own timeline. I don't know what the future holds for her, but I guess we don't know what the future holds for any of our children. What I am learning is to be happy with my life today and be happy with the blessings that we do have. It has been difficult for me to change how I think, but in a way it is freeing.
I am not sure if this has helped you in any way. I hope so.

Sure, it did - thank you! We did have the sequential screen done, and the results came back with an increased risk for DS. We are not going to have an amnio and are at peace with the idea of DS, should that turn out to be the case. Maybe it's b/c we both have known people with DS and are familiar with the challenges (as well as the blessings). I don't mean to downplay it at all, I'm just talking about how it is different from what my real fear is. What's really scary to me is severe intellectual & physical disabilities, where an individual is 100% incapable of functioning independently, cannot use a toilet, cannot communicate at all, etc. I'm sure there are some folks with DS who fall in this category, but most, I believe, are highly functioning.

I still can't believe you found out so late about your daughter's Trisomy 21. I hope as she gets older and you learn more, you find that she is very capable! I know this is a very difficult time for you...hugs.

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