Personal Stories

Newborn metabolic screening - carried out using a heel prick test - enables rare, serious disorders that can be helped with a special diet or other treatment to be picked up early and treated. Twenty-eight disorders are currently tested for in New Zealand.

PKU is caused by an absent liver enzyme that prevents metabolism of phenylalanine, an amino acid essential to brain development. It occurs in approximately 1 in every 15,000 newborns. Undetected and untreated with a special diet, PKU leads to irreversible mental retardation.

However, with a diet that limits phenylalanine, a common part of most foods, the brain can function normally. The diet for PKU consists of a phenylalanine-free medical formula and carefully measured amounts of fruits, vegetables, bread, pasta, and cereals. Foods to be avoided include milk, dairy products, meat, fish, chicken, eggs, beans, and nuts.

Jaydin lives with his grandparents. His grandmother Jo says his condition was picked up when he was a few days old. Jaydin had the heel prick test done and when the first result indicated there might be a problem, it was repeated a couple of days later to confirm the first result.

"We were rung by Jaydin's birth mother when he was 10 days old to say to come to an important family meeting - there was something wrong with him. I remember this date well as it was our wedding anniversary. Jaydin's birth parents, his maternal grandmother, his paternal granddad and I gathered and we learned about PKU for the first time. People with PKU are very limited in what they can eat, and I remember later that night as Peter (granddad) and I sat down to our anniversary meal we realised Jaydin would not be able to eat any of it, and we were in a state of shock. We are vegetarians so even our understanding of a PKU diet without meat was crazy and confused at this stage. 

Our understanding of the diet grew as he grew and the medical team has been great in their support of Jaydin and his extended family right through. He is now eight and a half and has only known the same medical team. He really trusts them, and the consistency of his management has been a great advantage.

I have been extremely open right through with Jaydin about what he can and cannot have. Early on he had a picture story book about PKU to learn from and recently we updated it to more grown up language. Jaydin was responsible for all the stories and pictures. His understanding is very good. He is confident about his difference and we take every opportunity to share baking and the like with his schoolmates.

One great story is when Jaydin was about three years old and was in the trolley at the supermarket while I was checking things through. The gentleman behind was chatting to him and got out his two-litres of milk and pretended to pour it over Jaydin.

Much to everyone's surprise, Jaydin told him that he couldn't have milk because it would  'break his brain', and then launched into a full description of PKU. The man was stunned, as was I! 

Jaydin had a rocky start to school but is now thriving and does his very best all the time. He plays the drums, learns judo, is a good swimmer and a great pizza maker.

I cannot speak highly enough of the benefits of finding out early that Jaydin had PKU, and of the massive support from the medical team right from the start. They have been with him every step of the way.

Their support has helped ensure Jaydin is the wonderful boy he is, with a world of choices ahead of him - and that's what every parent wants for their child."