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How it all began

Our families are at the heart of everything we do and CLDF began with one family’s story. Here, in this moving article we have reproduced from The Sunday Times in 1979, Peter and Sonia McGough explain why they started The Michael McGough Research Fund.

Our son Michael was born in May last year. For two months he was a model baby. How soon and how violently this idyllic state was to end.

Michael’s complexion had taken on a jaundiced pallor. At nine weeks he was admitted to hospital for tests to determine the cause of the jaundice. After two weeks of rigorous and painful tests, the general view was that Michael could have some form of serious liver complaint.

The only way to find out was to operate and have a look. The surgeon spoke to us upon completion of the operation. Within seconds Michael’s expectancy of a normal life span was reduced to a painful few months.

He had been born without bile ducts and would die from cirrhosis of the liver during infanthood, Michael’s reaction to the operations was severe. He was to spend the next six months in hospital, come close to death several times and undergo another operation.

In January he came home to all intents and purposes to die. Almost from the first week of being home, Michael’s general health started to improve. He became stronger, more playful and loving.

Most of all it was this ability to love and to inspire love that set him apart. He was always trying to kiss and cuddle us and when we showed affection to each other this doll child would smile and chuckle encouragingly.

How this angelic nature helped to alleviate the pain of knowing he would never go to school, ride a bike or have his own family. He became so precious that we could no longer bear the thought of losing this special son.

We had been told that his only chance of life was to undergo a complete liver transplant, which is not available to children in Britain because of lack of research to develop the required specialised transplant techniques. Had we the right to subject a child to a transplant? We deliberated over the final equation.

Do nothing and he will certainly die and die in pain. Do something and maybe, just maybe, he will live.

We contacted Dr Thomas Stargl of Denver, the world leader in liver transplantation who, after a period of weeks, finally agreed to accept Michael for a transplant.

We arrived in Denver in late September and Michael underwent two further operations as a prelude to the transplant planned for mid-October. After completion of the second operation on October 3, Michael suffered a heart attack and died in the recovery room after an hour-long fight to save him.

We asked to see our son for the last time. We saw him in the sterile surroundings of the recovery room. His ravaged body was covered by a surgical gown, his large saucer eyes were closed, his suffering over. Our special son was at peace, aged 17 months.

Our special son. How many other special sons? We were to find out that each year in the UK alone 400 babies are born with liver disorders. Can what Michael went through be, in this, the 20th century, multiplied so many times?

We also know that there is a chronic lack of funds to help children so afflicted. Only by private endeavour will money be channelled towards liver research for children. That is why, in conjunction with other parents who have lost children like Michael, we have pledged to raise funds for children’s liver research.

One day, not soon, but one day, these special sons and daughters will live and when they do it is hoped that the parents of previous special children will have played a part. In this way the traumas experienced by children like Michael will not have been without reason.

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