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Having a child is terrifying enough. Some folks might be up for the challenge of supporting a child with special needs for their entire life (or a good chunk of

Having a child is terrifying enough. Some folks might be up for the challenge of supporting a child with special needs for their entire life (or a good chunk of it), but I'm not afraid to say that it was a huge relief to know that my son had no known genetic abnormalities before he was born. There's nothing to be ashamed of here.

Red_Leaves_Flyy 6y ago
Seriously. I've seen several families destroyed by the challenges involved in raising children with special needs, or rare diseases. Having a nuero/genetically-typical child is a challenging full time job. Add in the prospect of it being a full triple-time job for their entire life, whether that's six years or 130 years and it's not likely to be remotely possible for the vast majority of families to sustain. Between the mandatory extra time commitments, lost pay, increased expenses, and the conversation changes. How could it not?
- mordechai9000 6y ago
  I had a coworker with a child with severe cerebral palsy, and the evident strain on him and his family was enormous. I couldn't believe they were effectively thrown on their own resources. I came to the opinion that people in that situation deserve all the help society can give them, including caregivers and even special living situations. Anyone who has children runs that risk. And society needs children, unless you believe the human race should let itself die out.
GordonS 6y ago
I have a daughter with Down's (we didn't know during pregnancy - actually, we didn't find out until she was almost 2!!), and my wife got NIPT tests on subsequent pregnancies. I don't know what we'd have done had either of them been positive, but at the very least we wanted to know beforehand. Like you said, there's nothing to be ashamed of here.
- mmastrac 6y ago
  > actually, we didn't find out until she was almost 2 I'm curious about this. I didn't realize that the condition could go undiagnosed long after birth!
  - GordonS 6y ago
    It is very unusual. Most parents will find out during pregnancy, immediately after birth, or within a few weeks of birth. In our case, somehow none of the health professionals noticed or said anything (yep, we seriously found out later that at least 3 of them suspected and said nothing - because it "wasn't within their remit"). Typical Down's facial features are not quite as prominent in our daughter, and developmentally, for a long time she tended to match her peers, or only lag behind a little. But coming on for 2 years, she still wasn't walking and her speech was lagging being, and we went to see a paediatrician - he recognised it immediately, and told us without even waiting on karyotyping. It was something of a shock :)
- kwhitefoot 6y ago
  That's astonishing. I think every mother over a certain age is offered a test here in Norway as a matter of course along with genetic counselling to make sure that she is able to make an informed decision once the result is known. This was the case for my children decades ago in Norway.
  - GordonS 6y ago
    Mothers in the UK get rough statistics based on their age (e.g. you're told you have a 1 in 8000 chance of having a kid with Down's), and have the option of an amnio, which is invasive and carries a risk of miscarriage, so many will go off the stats alone. NIPT has only been around for a few years, whereas amnio has been available for decades AFAIK, so I guess it's amnio that's been commonly been available in Norway too?
    - kwhitefoot 6y ago
      Yes it was amnio.

Red_Leaves_Flyy 6y ago

Seriously. I've seen several families destroyed by the challenges involved in raising children with special needs, or rare diseases. Having a nuero/genetically-typical child is a challenging full time job. Add in the prospect of it being a full triple-time job for their entire life, whether that's six years or 130 years and it's not likely to be remotely possible for the vast majority of families to sustain. Between the mandatory extra time commitments, lost pay, increased expenses, and the conversation changes. How could it not?

mordechai9000 6y ago
I had a coworker with a child with severe cerebral palsy, and the evident strain on him and his family was enormous. I couldn't believe they were effectively thrown on their own resources. I came to the opinion that people in that situation deserve all the help society can give them, including caregivers and even special living situations. Anyone who has children runs that risk. And society needs children, unless you believe the human race should let itself die out.

GordonS 6y ago

I have a daughter with Down's (we didn't know during pregnancy - actually, we didn't find out until she was almost 2!!), and my wife got NIPT tests on subsequent pregnancies. I don't know what we'd have done had either of them been positive, but at the very least we wanted to know beforehand. Like you said, there's nothing to be ashamed of here.

mmastrac 6y ago
> actually, we didn't find out until she was almost 2 I'm curious about this. I didn't realize that the condition could go undiagnosed long after birth!
- GordonS 6y ago
  It is very unusual. Most parents will find out during pregnancy, immediately after birth, or within a few weeks of birth. In our case, somehow none of the health professionals noticed or said anything (yep, we seriously found out later that at least 3 of them suspected and said nothing - because it "wasn't within their remit"). Typical Down's facial features are not quite as prominent in our daughter, and developmentally, for a long time she tended to match her peers, or only lag behind a little. But coming on for 2 years, she still wasn't walking and her speech was lagging being, and we went to see a paediatrician - he recognised it immediately, and told us without even waiting on karyotyping. It was something of a shock :)
kwhitefoot 6y ago
That's astonishing. I think every mother over a certain age is offered a test here in Norway as a matter of course along with genetic counselling to make sure that she is able to make an informed decision once the result is known. This was the case for my children decades ago in Norway.
- GordonS 6y ago
  Mothers in the UK get rough statistics based on their age (e.g. you're told you have a 1 in 8000 chance of having a kid with Down's), and have the option of an amnio, which is invasive and carries a risk of miscarriage, so many will go off the stats alone. NIPT has only been around for a few years, whereas amnio has been available for decades AFAIK, so I guess it's amnio that's been commonly been available in Norway too?
  - kwhitefoot 6y ago
    Yes it was amnio.