Byron’s Story

Byron’s Story

Byron’s story, by his mum, Carrie

I found out I was pregnant, after suffering a miscarriage. We were excited, albeit a little nervous. I opted out of the DS screening at 12 weeks, just as I had done with my first child. Everything was progressing (I had gestational diabetes but I also had that with my first) until our 20 week scan.

The sonographer was chatty and explained everything, then said its a boy!! Then she went really quiet, and said she needed to go speak to someone. She came back with a doctors and they said your baby has fluid on the brain or mild ventriculomegaly. They told me it was measuring too high. I panicked and so did my husband, as we thought we were going to lose another baby. But instead, we were referred to foetal medicine. They scanned me at regular intervals and the fluid never changed. I also had MRI scans of my bump to check him.

Fast forward to 15th Dec 2017, which was the day for my elective C-section to meet our baby, who we had named Byron. Everything went smoothly until we were in recovery and I held his hand, and I noticed the middle 2 fingers on both of his hands were joined, right to the tip of his fingers. I shouted the nurse, but she said it was common. Then at the new born check, he was noted to be floppy with dysmorphic features. But nobody spoke to me about what was going on! I was so upset, and I cried most nights.

The midwives were amazing and put me into a side room, as I was having lots of medical staff looking at him. From that day, I knew something was ‘wrong’, but I didn’t know what. Nobody would say what was happening, or if my baby was OK. I was in for 5 days and when we came home, the appointments were non-stop. We were sent to City hospital, when he was around 2-3 months old, for genetic testing. After a long wait, when Byron was then 7 months old, we finally had a diagnosis!

I will never forget that day. The doctor said we have the results, and “I’m so sorry! It’s not good. It’s Trisomy 21 (Down syndrome)! I cried! But it wasn’t due to fear or sadness, but from relief. I had been so scared of all the possible issues or syndromes he might have, or thinking he was going to die. Our baby boy just had Down syndrome. I didn’t care about an extra chromosome! We already loved him so much.

I think we are still playing catch-up on learning things, due to having such a late diagnosis. But we feel supported and not alone, as Nottinghamshire Down Syndrome Support Group has helped us so much. Byron started us on a journey, and it’s amazing!