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.
Losing a child is so devastating and overwhelming. It's an experience unlike anything. And all of our losses are devastating and overwhelming. But losing life to someone you were planning your life around, projecting into the future, is hard. You were given such a short time with her. Blessed time. The illness she had is something that to date there is no cure for. Nature has its rules and this one was hard.
Whatever you do, go on loving each other and everyone else in the family. You are all very important and you have to move on. But don't forget! I wish I had more words for you. But know that you are not alone in your loss. Parents have lost children to illnesses and accidents.
Mothers day was always hard for me. I was never able to have more children. I always watched how only the living mothers were recognized on Mothers day and only living children participated.
I just lay low on Mothers Day.
I hope that you learn to move on. Give her her rightful place within your family. And fill your home with more love.