Noah was diagnosed with CDH at our 20 week scan, it was very hard to process at the time with so many question’s but we never gave up. As the weeks went by we found out the news that Noah’s condition was severe. We also had genetic testing done, through a new system which the blood gets tested down the south of the country, this came back to say Noah had a spelling mistake in the ‘MYRF’ gene. This testing is new and they had told us there is very little research, as this genetic testing is new and they are finding it alot in CDH babies. So once again we felt knocked down, but I felt so determined that Noah was going to be strong.
Noah was so active throughout my pregnancy he was always moving around, it’s hard to imagine he was so poorly. Niah finally arrived August 28th 2019, via emergency c section, he was whisked away to be stable by the neontologist, he never even cried, I got to touch his hand whilst they took him away to NICU.
The moment i had feelings in my legs from the anesthetic wearing off was the best feeling knowing I could go down and meet my baby for the first time. As I stood from the bed a nurse had come in to tell me I need to go to NICU now as Noah is poorly. They quickly took me down and explained that Noah was the sickest baby in there, they are trying there best to stablize him, but his sats kept dropping. The NICU team told us that it was best to call our family now if they wanted to visit him. I spent very few minutes alone with Noah before all out family surrounded him with love, this little boy baught so many tears to people, and knowing he touched so many hearts I truly know he is special. Unfortunately Noah was rejected for ECMO. After a couple more hours Noah was just giving up, his sats were dropping rapidly, and he took his last breath in my arms. I’m still in shock 4 months later, I still can’t believe being a first time mum, it got taken away from me. It’s hard believe I’m a mother when i can’t mother my boy, I had to come home empty handed. However we will never give up hope, and i recently found out I am pregnant again, I just hope this is a rainbow baby sent from Noah, we love you Noah and miss you so so much xxxxxxx