Trisomy 18 (Edwards Syndrome) Support Group
Trisomy 18 or Edwards Syndrome is a genetic disorder. Edwards Syndrome can result in characteristic physical abnormalities and significant developmental delays. For this reason a full-term Edwards syndrome baby may exhibit the breathing and feeding difficulties of a premature baby.
Hi, I am from the UK, am 42 and have 2 great teenage sons, 2 great step-kids and a wonderful husband.
Had the 2 boys within short space of time when I was in my early 20's at Winchester hospital and after a difficult time with relationships eventually met the love of my life on-line and we decided to try for a baby before it was too late! We were lucky and got pregnant after 3 days of trying.
We were overjoyed when at the 20 week scan we were told we were having a baby girl - as was the entire family. At the 32 week scan we were told there was a lot of fluid, but not to worry. At the 36 week scan the fluid was off the charts and she was quite small - the boys had both been 8lbs. We had to go back after a week and be scanned by the consultant who told us our daughter could be damaged or equally ok - it was devastating - we'd had 4 staggeringly healthy kids between us - so we just thought that it would all be ok and that they were just over dramatising.
Maizie Mo Edie was delivered by C section on 27th Nov 2009 and weighed 4lb 3oz and all seemed well, she was beautiful with lots of long dark hair - she had to go to special care but did really well. On day 6 they diagnosed a hole in the heart that was repairable - but on day 7 they told us she had full-form Edwards - we were devastated.
She died on day 22 peacefully in my arms with her whole family there at a local childrens hospice.
We are only now starting to face up to the loss, we have spent 2 years pretending it didn't happen - we just don't know how to move on from here - anyone got any ideas? We have never had any contact with anyone else who has gone through this experience and think its a good place to start.
Had the 2 boys within short space of time when I was in my early 20's at Winchester hospital and after a difficult time with relationships eventually met the love of my life on-line and we decided to try for a baby before it was too late! We were lucky and got pregnant after 3 days of trying.
We were overjoyed when at the 20 week scan we were told we were having a baby girl - as was the entire family. At the 32 week scan we were told there was a lot of fluid, but not to worry. At the 36 week scan the fluid was off the charts and she was quite small - the boys had both been 8lbs. We had to go back after a week and be scanned by the consultant who told us our daughter could be damaged or equally ok - it was devastating - we'd had 4 staggeringly healthy kids between us - so we just thought that it would all be ok and that they were just over dramatising.
Maizie Mo Edie was delivered by C section on 27th Nov 2009 and weighed 4lb 3oz and all seemed well, she was beautiful with lots of long dark hair - she had to go to special care but did really well. On day 6 they diagnosed a hole in the heart that was repairable - but on day 7 they told us she had full-form Edwards - we were devastated.
She died on day 22 peacefully in my arms with her whole family there at a local childrens hospice.
We are only now starting to face up to the loss, we have spent 2 years pretending it didn't happen - we just don't know how to move on from here - anyone got any ideas? We have never had any contact with anyone else who has gone through this experience and think its a good place to start.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Good luck to you. My heart goes out to you.