Taylun’s Story, by his mum, Fay

This is Taylun James – TJ! His name was already picked out as soon as I knew he was going to be another boy Throughout my pregnancy, nothing was flagged up. The routine blood test came back low, at 1 in 4500.

It wasn’t till after Taylun was born that I found out he had Downs syndrome, when he was 3 days old. Taylun’s birth was very frightening for me. I was only 22, but at 34 weeks 6 days pregnant, I was involved in a near car accident and went to the hospital to be told my baby had changed position from head down to transverse. I was allowed home after they checked him by a scan and had his heartbeat monitored. This was on the Saturday night. I went back on the Monday for a check up and was told his heartbeat kept dropping.

I was admitted I was put on medication in case he needed delivering early. which scared the life out of me. My blood group is rhesus negative so I was told I was more likely to have a ‘blue baby’ (as the doctors said). I had to carry a warning card while pregnant. Fast forward to Friday 27th May, and his heart rate had dropped considerably, just after midnight. So at 1.15am, I was rushed down for an emergency C-section. I was so scared that I started to cry. I thought I was going to die and all I wanted was my mum, and to know my baby boy was going to be fine.

His delivery was fast and he was born lifeless. They had to revive him, which felt like forever. I didn’t even see him as he was whisked away to neonatal ICU.I had a horrible nurse on the ward who woke me to say, if you don’t get out of bed you can’t go and see your baby. The pain after a C-section is unbearable, but I fought the pain so I could see my son.

The day after he was born, I was taken down in a wheelchair and, to me, he just looked like a perfect tiny baby – attached to all kinds of tubes and wires, but perfect. When he was 3 days old, I had a visit from Dr Liz Marder, who spoke to me about children who have Down syndrome. She told me that the test had shown Taylun had some abnormalities – club foot, single creases on his hands, low bridge nose, etc. I didn’t care, as long as my son was alive! That was all I was bothered about!

I know that babies do things at their own pace, and Taylun has always taken longer to reach his milestones. I wanted to breastfeed him, with him being born prematurely and giving DS, they said he would have trouble latching on. But Taylun didn’t! He was a pro!

At 3 days old his feeding tube was taken out and he was feeding every 3 hours. I loved the bond we had, holding this little life I created and he was doing what he should of had trouble doing.

I learnt to never rule out what Taylun could do! Regular physio was needed for Taylun, with little arm and leg gaiters and V-shape pillows to keep his hips and arms straight, and to strengthen the ball sockets.

His progress was slow, but he got there! Today my son is 16 years old loving life! He loves bouncing on his trampoline, riding his trike, watching Mr Tumble and going to the NDSSG dance classes each month. He’s a wonderful young man!