Oscar james memorable place&research
Donation protected
September 2019, 3 months after I gave birth to my beautiful daughter Olivia rose, I found out I was expecting again. This came as a shock as I wasn't expecting to fall pregnant again any time soon, due to having an emergency operation during my pregnancy with Olivia, where they had to remove my left ovary and my left Fallopian tube. I was left with a 50% chance of being able to conceive again.
8 weeks later in November 2019, I went for my 12 week dating scan where I was informed my baby was growing perfectly with no concerns. I was even informed my child had 2 prefect kidneys and his heart was fine (my mum was born with a hole in her heart and one kidney so I made sure I asked these questions).
After my scan I was offered the screen test to test for Downs, Edwards, Patu syndrome which I consented too. A week or two later my results came back through the post and I had a very low chance of my unborn child having one of these syndromes, so I carried on with my pregnancy like normal as I had no concerns.
8 more weeks went by and I had my 20 week gender scan, where yet again I was informed my baby was growing and developing correctly, I also chose to find out the gender of my child at this scan and I was told we was having a baby boy, my family was now complete.
Fast forward to 32 weeks and my little boy decided he wanted to make a very early and quick appearance and he arrived at home 8 weeks early on 24/04/2020.
We was both rushed to hospital and I wasn't able to see my baby for two days due to covid restrictions. We was informed by the hospital that Oscar was doing well and he would be home for his official due date in 8 weeks time due to being premature.
A week later me and my partner was took into a room and we got the devastating new that Oscar had been diagnosed with Edwards syndrome (triosmy 18) at this point I didn't know what to think as I hadn't actually read about Edwards before, I had just heard about it through the screen tests, so I thought that's fine we will still make sure Oscar has the best life possible. Then the doctor hit us with the words 'its a life limiting condition it's that rare no doctor knows how to treat it'.
My whole world came crashing down all the questions I had I couldn't get answers for as know one knows how to care for a child with Edwards. The advise given when it's picked up in pregnancy is too terminate.
Babies who have Edwards syndrome don't normally survive pregnancy, if they do they don't live longer than a few hours/days. I was extremely lucky and my beautiful baby boy made it to FOUR weeks old! In that short four weeks Oscar was also diagnosed with other health conditions linked to Edwards syndrome, these being a horse shoe kidney and a few holes in his heart, both of these conditions can be picked up in a ultrasound!
But yet again it wasn't. Oscar spend the four weeks of his life on palliative care because there isn't any treatment or cure for this condition, that isn't a life for a baby!
Oscar sadly passed away on 27/05/2020. The reason I've done this post is to make people aware of Edwards syndrome and to make awareness that the screen test you are offered during pregnancy is not 100% accurate.
The pain and suffering my baby boy went through could have been prevented!
I have set up a go fund me in the hope of raising funds to finish off Oscar's memorable place as no family or friends where able to meet Oscar. All remaining funds will be donated to the research centre in hope that one day they can treat babies born with Edwards syndrome and maybe they will have/get some sort of life.
8 weeks later in November 2019, I went for my 12 week dating scan where I was informed my baby was growing perfectly with no concerns. I was even informed my child had 2 prefect kidneys and his heart was fine (my mum was born with a hole in her heart and one kidney so I made sure I asked these questions).
After my scan I was offered the screen test to test for Downs, Edwards, Patu syndrome which I consented too. A week or two later my results came back through the post and I had a very low chance of my unborn child having one of these syndromes, so I carried on with my pregnancy like normal as I had no concerns.
8 more weeks went by and I had my 20 week gender scan, where yet again I was informed my baby was growing and developing correctly, I also chose to find out the gender of my child at this scan and I was told we was having a baby boy, my family was now complete.
Fast forward to 32 weeks and my little boy decided he wanted to make a very early and quick appearance and he arrived at home 8 weeks early on 24/04/2020.
We was both rushed to hospital and I wasn't able to see my baby for two days due to covid restrictions. We was informed by the hospital that Oscar was doing well and he would be home for his official due date in 8 weeks time due to being premature.
A week later me and my partner was took into a room and we got the devastating new that Oscar had been diagnosed with Edwards syndrome (triosmy 18) at this point I didn't know what to think as I hadn't actually read about Edwards before, I had just heard about it through the screen tests, so I thought that's fine we will still make sure Oscar has the best life possible. Then the doctor hit us with the words 'its a life limiting condition it's that rare no doctor knows how to treat it'.
My whole world came crashing down all the questions I had I couldn't get answers for as know one knows how to care for a child with Edwards. The advise given when it's picked up in pregnancy is too terminate.
Babies who have Edwards syndrome don't normally survive pregnancy, if they do they don't live longer than a few hours/days. I was extremely lucky and my beautiful baby boy made it to FOUR weeks old! In that short four weeks Oscar was also diagnosed with other health conditions linked to Edwards syndrome, these being a horse shoe kidney and a few holes in his heart, both of these conditions can be picked up in a ultrasound!
But yet again it wasn't. Oscar spend the four weeks of his life on palliative care because there isn't any treatment or cure for this condition, that isn't a life for a baby!
Oscar sadly passed away on 27/05/2020. The reason I've done this post is to make people aware of Edwards syndrome and to make awareness that the screen test you are offered during pregnancy is not 100% accurate.
The pain and suffering my baby boy went through could have been prevented!
I have set up a go fund me in the hope of raising funds to finish off Oscar's memorable place as no family or friends where able to meet Oscar. All remaining funds will be donated to the research centre in hope that one day they can treat babies born with Edwards syndrome and maybe they will have/get some sort of life.
Organizer
Charlie Daley
Organizer
England