Goldenhar syndrome

Nicola and Gerald Woodridge's son Steven, now aged nine, was born with Goldenhar syndrome (the condition affecting the baby at the centre of a recent legal battle between her parents and the hospital). At birth, he had an abnormal ear, a keyhole mouth, poor vision and hearing, and twisted vertebrae

Nicola

Steven was born with Goldenhar syndrome. I knew nothing about the syndrome back then and so turned to various support groups for information and help. While I now consider Steven's case to be mild compared to many others, he was born with a lot of problems. He had a keyhole mouth, abnormal vertebrae so his head was on his shoulder, his ear was abnormal and both his hearing and his vision were poor. He also had to be tube-fed for three months at home.

As soon as I heard the word "syndrome", I nearly fell off the chair. My husband preferred to call it a disorder, it was his way of coping with it. But all through the pregnancy I felt that something wasn't right - most mums who have a child with Goldenhar say the same. My scans had come up normal - Goldenhar never shows up - but nothing could have been done anyway.

After Steven was born, I spent a lot of time talking to other mums and groups and accepted all the help I could. The first five years were tough; it was one hospital appointment after another. But we got all the support we needed and my mother lived close by. But soon a routine developed and we got to know all the doctors. They took a special interest in Steven and were fantastic. After all those years of corrective surgery, Steven now only suffers from bad hearing and a slightly abnormal ear - but it doesn't effect him day to day. He copes really well - he just gets on with life. He's a very happy child who doesn't let disability get in the way. As a family, we've never let the syndrome isolate us, nor has it ever put a strain on us. We've always been close but Steven having Goldenhar syndrome has brought us all even closer together.

The Family Support Group that I run has gone from strength to strength over the years, although we've had a low profile until recently when the well-publicised case of Goldenhar syndrome in the media suddenly flung us and the syndrome into the spotlight. There are over 75 families in our group and we gain so much support from one another. We have a meeting every two years - the next is this April in Sheffield - and publish monthly newsletters. The meetings are a great opportunity for us to get together and for the children to meet others who are just like them. They have a great time together, and all the mothers, myself included, just click. We have something we all share, so it's like one big happy family.

Gerald

I was there when Steven was born, and didn't know what the problem was. It took over a week for us to find out that Steven had Goldenhar syndrome. As Nicola was a nurse she was able to explain it better to me and helped me to understand. Goldenhar is not a syndrome that people know about, and I was no exception. At first, not even the doctors understood what was wrong with Steven. But once we found out, all we could do was go with the flow and just try to adapt to our circumstances.

The next five years were very strained as we went from one hospital to the next while juggling work and looking after our other son, Mathew. We were dealing with four or five hospitals during that time, as Steven underwent various operations to correct his face, so it was a very testing period. I was especially concerned when he started school as I worried that kids might bully him. But thankfully he hasn't had many problems. The operations were all very successful and his face structure is good now - although he can't rotate his head and his hearing is impaired. But I don't think his face should be altered anymore, we should leave it until he is old enough to make the decision himself.

I don't get involved much with the running of the support group, but I attend all the meetings. I think what Nicola does is fantastic and know that the other parents really appreciate it. There's not much information out there so the group helps families understand all the various stages of Goldenhar syndrome, the problems and what can be done.

As for Steven, we never let him think he is different, just special.

Donations can be sent to the Goldenhar syndrome Family Support Group, 9 Hartley Court Gardens, Cranbrook, Kent, TN17 3QY

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