Thomas

Our family, mum, dad and two lovely girls. We decided a third baby would be nice and when a scan showed a healthy baby boy it was just the icing on the cake!

Labour at home progressed steadily until the midwife said, “Drop everything we need to get to the Hospital!” She wasn’t happy with baby’s heart rate. We made it with not much time to spare and out popped baby, purple and covered in poo.

He was whisked off to the new born unit and I was taken to the ward. I had no idea anything was wrong and even phoned my mum to say all was fine. Then the first crunch, a paediatrician and head nurse delivered the news of Down syndrome with the “we are so sorry” line.

What were they so sorry about? I didn’t really even know what Down syndrome was and had never had any contact with anyone who had Down syndrome. All I knew was that they were delivering bad news.

Not having my baby with me was hard but the hardest thing was telling the family and friends that something was wrong.

It helped when my brother and his wife came to visit, they have a daughter with Spina Bifida, and knew all too well what we were going through.

Another positive thing was a visit from a family with a cute little boy with Down syndrome. Having the father there meant Greg had someone to relate to.

Then the second crunch, Thomas was found to have a heart condition.

We had to go for further tests to the Auckland heart unit. That was scary as we weren’t used to big hospitals. They discovered a major defect. We had no idea what they were talking about or how serious it was.

Thomas seemed to be shrinking, by the end of one week his legs looked so skinny I knew things weren’t right. Not knowing where to go, we took him back to the new born unit. The paediatrician said he had lost weight and was in heart failure, so we had better spend a “couple of days” on the children’s ward. Our stay lasted for three and a half months!

The paediatrician got to know Thomas so well he nicknamed him “Thomas the Tank Engine” as he huffed and puffed along! Once he held Thomas up in his big hands and told him off for putting his parents through hell!

We watched our son fight for his life. He lost so much weight he became skin and bone, he had high temps, diarrhea, rashes, and chronic respiratory problems. The fact he had Down syndrome was not an issue anymore.

One really bad day, the paediatrician called us into a private room to tell us Thomas may not live. On two occasions he stopped breathing and at one point the heart unit in Auckland turned us away as he was too sick to be operated on. There were times when I was so scared I hid from the paediatrician.

A new medication was his turning point. He improved and when he was 5 months old we took him home.

When he was nearly three he had his heart operation. It was a big success. For two and a half years, he’d had a naso-gastric tube for feeding, but two months after the operation he started to eat and hasn’t stopped since!

Thomas is eleven years old now, a very social out-going young man with attitude!

He loves rugby and has heaps of friends at school. He attends his local primary school where the kids just see him as being a bit short (he’s the size of a five year old). We wouldn’t be without him and know how lucky we are to still have him with us. On this long journey Thomas has taught us a lot about life and how important it is to have a positive outlook. I have been involved with setting up and running the support group in our area. I don’t want any family to go through an experience like ours without support.