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Coby-Jett was a twin, he stayed with us just 17 days... The best and worst days of my life!
Having got 6 children already, we tried for one more... Resulting in our 2nd set of twins! We were totally shocked, but so happy too.
At our 20 week scan we were hit with the bug blow, we can see some abnormalities with twin 2, I'll just get a second opinion. I lay there wondering what was happening, they really didn't speak to us about what they'd seen or what was happening. We were just referred to the fetal care team.
We went for a scan with fetal care where they found the heart wasn't working as it should also his kidney wasn't working 100%. At this point we thought he was a she as no one could get a clear view.

Our world was falling apart, but we had to stay strong for the other children at home.
We went to Leicester hospital for a detailed heart scan which revealed a large vsd and asd. We were taken into a room then and the nurse explained to us if he had trisomy 21 he'd have a good chance of survival and have his heart operated on. If it was trisomy 13 or 18 it'd be a whole different story and they wouldn't consider operating on his heart! They asked us to have an amniocentesis to be sure what the next steps would be, we point blank refused as for us it didn't matter if our baby had a disability of any kind, he would choose how long he fought!
Weeks kept going by, scans were showing the same, then they showed his lemon shaped head and small genitals: pointing to him having t18 or t13. They still pushed for an amniocentesis, but I wasn't having one as it could have jeopardised twin 1 as well, which we weren't prepared to do.
We knew he was a fighter as we were told he may never survive in the womb.
We got to 30 weeks and we had a non-evasive NIPT blood test, this was done through the NHS, though very rarely! The results came back as a high probability of Edwards’ syndrome and I was gutted! How do I tell my partner, my children and my family?! I was heartbroken, but I chose to let him fight!
From this point on, the words ‘Incompatible with Life’ and ‘potential’ were all we heard! They still wanted us to terminate his pregnancy but there was no way we were going to do this!
Being twins, they were born at 36+6 by elective caesarean. It went well, he came out crying and needed very little oxygen. He was taken to neonatal and put on the monitors and a small amount of cpap.
I didn't see him until the following day. He was like a little china doll, looked so fragile. But as the days went by he became very alert and watched everything you did! He also had two teeth which is very rare.
We only had one scare when he was in hospital and we were expecting the worst, but he fought back and eventually on day 14 we took him home! It was very scary, but we managed.
We had him home for 3 days when he passed away peacefully in his sleep, having known love, touch and family life!
We miss him so much every day, but I know he fought a good fight and defied the doctors living for those 17 days! These babies are warriors and deserve every chance like any other baby x

Created: 30/04/2020 11:37

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