Telling of a disability/condition before birth
Discussion
We've been given a high risk of Downs Syndrome, 1 in 4 based on the current scan (at 13 weeks). So we've done a Harmony test that will tell us either way by the end of the week. We'll keep him/her whatever the results, but unsure of how/whether to tell people.
For anyone who knew during pregnancy that their baby was going to have difficulties, did you tell everyone at the point when you told them you were having a baby; or just tell closest friends/family; or tell anyone who asks about the baby's health. How did you handle it?
It's still more likely that everything will be fine than not, just want to get our strategy clear before making a formal announcement to the market.
For anyone who knew during pregnancy that their baby was going to have difficulties, did you tell everyone at the point when you told them you were having a baby; or just tell closest friends/family; or tell anyone who asks about the baby's health. How did you handle it?
It's still more likely that everything will be fine than not, just want to get our strategy clear before making a formal announcement to the market.
Edited by anonymous-user on Sunday 27th November 13:21
Not personally but I do have 3 staff who have severely disabled children (one who had a downs child anpngst 2 others with other chromosome defects) and they chose to not tell anyone until after birth due to the judgement and comments of others on how they couldn't deal with such a child and would need to have aborted it which was too upsetting for them to handle
alorotom said:
Not personally but I do have 3 staff who have severely disabled children (one who had a downs child anpngst 2 others with other chromosome defects) and they chose to not tell anyone until after birth due to the judgement and comments of others on how they couldn't deal with such a child and would need to have aborted it which was too upsetting for them to handle
That is very good advicenumtumfutunch said:
alorotom said:
Not personally but I do have 3 staff who have severely disabled children (one who had a downs child anpngst 2 others with other chromosome defects) and they chose to not tell anyone until after birth due to the judgement and comments of others on how they couldn't deal with such a child and would need to have aborted it which was too upsetting for them to handle
That is very good adviceJust thought I'd say all the best whichever you choose - telling people before or after.
We were given 1:4 for ours and it turned out to be a false alarm, so it's not a foregone conclusion, even though it feels like it at the time.
(I'd also go with telling people after the birth as you gain very little from telling them beforehand.)
We were given 1:4 for ours and it turned out to be a false alarm, so it's not a foregone conclusion, even though it feels like it at the time.
(I'd also go with telling people after the birth as you gain very little from telling them beforehand.)
Crumpet said:
Just thought I'd say all the best whichever you choose - telling people before or after.
We were given 1:4 for ours and it turned out to be a false alarm, so it's not a foregone conclusion, even though it feels like it at the time.
(I'd also go with telling people after the birth as you gain very little from telling them beforehand.)
Same for us. Kept it to ourselves as we wanted all the discussion to be positive about the new littl'un and not potentially "don't worry it'll be OK" etc.We were given 1:4 for ours and it turned out to be a false alarm, so it's not a foregone conclusion, even though it feels like it at the time.
(I'd also go with telling people after the birth as you gain very little from telling them beforehand.)
Watching with interest
If the GF and I progressed with kids in the future there is a V high chance of a genetic condition, so much so Guys Hospital have recommended selective IVF.
We have talked about the unplanned situation (Guy's have said that testing in this circumstance is a possibility) but having seen what my GF's parents have had to put up with for both of her siblings there is no chance that we could become lifetime carers - no real quality of life for them or ourselves - severely limiting life.
Despite being a trustee of a charity helping those with SEN neither the GF or I could deal with it ourselves, daily so we'd have to explore other options.
If the GF and I progressed with kids in the future there is a V high chance of a genetic condition, so much so Guys Hospital have recommended selective IVF.
We have talked about the unplanned situation (Guy's have said that testing in this circumstance is a possibility) but having seen what my GF's parents have had to put up with for both of her siblings there is no chance that we could become lifetime carers - no real quality of life for them or ourselves - severely limiting life.
Despite being a trustee of a charity helping those with SEN neither the GF or I could deal with it ourselves, daily so we'd have to explore other options.
Current thinking is that we wouldn't get any 'judgement' reactions from friends, family or colleagues (maybe a few of my wife's colleagues, maybe), but also the 'what good would come of telling' makes a lot of sense.
The thing I would be most worried about is genetic anomalies raise the risk of miscarriage (in some DS cases up to 1 in 2) so would feel we could never quite relax while people were getting all enthusiastic on our behalf. Better to have positive vibes though, I guess.
If interested, the 13 week scan checks a fold of fluid on the back of the baby's neck, the measurement they took of this combined with our age led to the 1 in 4 prediction based on previous historic cases. A re-scan showed everything else was developing normally and the little wriggler was very active so those are both good signs. The NHS did a blood test, and the following step would have been an amniocentesis, but the risk of miscarriage from that is 1 in 100 so we ended up paying for a blood test that checks the baby's DNA in the mother's blood, and is over 99% accurate at detecting Downs, and I think 96% and 93% at detecting much more serious but much less common chromosome anomalies.
The thing I would be most worried about is genetic anomalies raise the risk of miscarriage (in some DS cases up to 1 in 2) so would feel we could never quite relax while people were getting all enthusiastic on our behalf. Better to have positive vibes though, I guess.
If interested, the 13 week scan checks a fold of fluid on the back of the baby's neck, the measurement they took of this combined with our age led to the 1 in 4 prediction based on previous historic cases. A re-scan showed everything else was developing normally and the little wriggler was very active so those are both good signs. The NHS did a blood test, and the following step would have been an amniocentesis, but the risk of miscarriage from that is 1 in 100 so we ended up paying for a blood test that checks the baby's DNA in the mother's blood, and is over 99% accurate at detecting Downs, and I think 96% and 93% at detecting much more serious but much less common chromosome anomalies.
We found out at the 20-week scan that our daughter's left arm wasn't fully formed - stops just before the elbow. After a few days of thinking it through, and getting tests to confirm it wasn't a genetic syndrome, we chose to continue. Of course we're glad we did, and we learn more every day. That was seven years ago.
We told people who we wanted to know - family and friends, as there seemed little point in not telling anyone - once born the news was out. Some people, not close to us, didn't understand why we'd continue, but we have other experiences that helped with the decision, and with how we have coped with things so far.
Noone can say what is best for you, but if you're planning to continue the pregnancy, might as well get others close to you prepared and prepared to help if you need it.
We told people who we wanted to know - family and friends, as there seemed little point in not telling anyone - once born the news was out. Some people, not close to us, didn't understand why we'd continue, but we have other experiences that helped with the decision, and with how we have coped with things so far.
Noone can say what is best for you, but if you're planning to continue the pregnancy, might as well get others close to you prepared and prepared to help if you need it.
PomBstard said:
We found out at the 20-week scan that our daughter's left arm wasn't fully formed - stops just before the elbow. After a few days of thinking it through, and getting tests to confirm it wasn't a genetic syndrome, we chose to continue. Of course we're glad we did, and we learn more every day. That was seven years ago.
We told people who we wanted to know - family and friends, as there seemed little point in not telling anyone - once born the news was out. Some people, not close to us, didn't understand why we'd continue, but we have other experiences that helped with the decision, and with how we have coped with things so far.
Noone can say what is best for you, but if you're planning to continue the pregnancy, might as well get others close to you prepared and prepared to help if you need it.
Hi - off topic, but I wondered if you know about this guy We told people who we wanted to know - family and friends, as there seemed little point in not telling anyone - once born the news was out. Some people, not close to us, didn't understand why we'd continue, but we have other experiences that helped with the decision, and with how we have coped with things so far.
Noone can say what is best for you, but if you're planning to continue the pregnancy, might as well get others close to you prepared and prepared to help if you need it.
https://blog.scope.org.uk/2015/07/29/theyre-biting...
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