When Jeff and I got married we knew nothing about PKU. Even during the first two years of us building a home together we were oblivious about this Metabolic Disorder. We found out all about it with a shock when we had our first child. Little did we know that we were in fact carriers of this disease. Apparently if you are a carrier, there is a 25 percent chance that your child will end up with PKU.
When Luke had his heal pricked I had no idea that the results would be so devastating (devastating at the time but in hindsight it could have been so much worse). My main message to all of you out there who find out that your child has PKU is, “DON’T WORRY”. I wish I had someone to speak to at the time, I think it would have made life so much easier. I am not saying that the help we got from the visiting Midwife and Dietitian was no good: you just wanted to speak to someone who had been through it all.
I remember being very depressed and wondering how I would cope. Jeff was strong and he found out a lot about PKU at the various libraries he visited. We were then given a life line, an introduction to a family who had two children with PKU not very far from us. Cheryl was great she reassured me that there are few differences to bring up a child without PKU: her first child did not have the disease.
Gradually I got use to the whole idea myself, and I got into a routine of preparing the formulas: I even got use to the smell! Life continued and little Luke grew bigger and bigger. We got involved in with mother and toddler groups and formed a good relationship with a number of other PKU families: we couldn’t meet that often because we were al spread out. As far as I could see Luke was growing up to be a normal little boy. I on the other hand had to learn to be more organised.
Then not long after Luke’s second birthday I fell pregnant again. It wasn’t planned although Jeff and I always wanted more children. We were a bit apprehensive at first but having had the experience with Luke we knew it wouldn’t be the end of the world if number two was PKU too.
And so it was, Matthew was born on a cold December morning. He seemed healthy enough, but the screening was to show that he had PKU. Did we freak out this time, no we didn’t. In many ways I was much happier that Matthew had PKU because I knew meal times would be easier. Luke was as proud as punch that he now had a little brother.
I thought they would be similar but they were very different in character. Matthew was more demanding, and it was nearly a year before he slept through the night. He seemed to be into everything: very mischievous but he always gave me a great big cheeky smile. He had to learn quickly to stand up for himself when his bigger brother decided that it was his turn to play with a given set of toys. After speaking to mothers whose children did not have PKU it was obvious that he was just like any other child: looking to develop his own character.
After 4 years of having a house full of boys I convinced Jeff that we should go for another, this time I wanted a girl. The question of PKU never even crossed our minds, and as luck would have it, I gave birth to a beautiful bonnie girl just over a year later.
In terms of children, we have had PKU, PKU, PKU. They have all grown healthy and they are doing well at school. They are even keen on sports. It has not been easy, but having spoken to many friends I can say that all the problems we have had are the ones experienced by any family. Remember giving birth to a child with PKU is not the end of the world: they will turn out to be just like any other.