A MOTHER whose two children were the first siblings in the UK to have heart transplants for a hereditary condition has issued a heartfelt plea to the government to change Scotland's organ donation laws.

 

Mary Moffat has backed a bill put forward by Glasgow MSP Anne McTaggart to introduce an opt-out transplant system to help increase numbers on the organ donor register.

The Evening Times has led a three-year campaign calling for the change.

Mary's children Stephen, 18, and Rachael, 13, suffer from restrictive cardiomyopathy. Their father, Andy, had the rare, genetic condition and died of complications during a heart transplant at the age of 46.

Stephen and Rachel have recovered well but Mary knows it is likely that both will require another transplant in the future. Every day, three people die waiting because of major shortages of donor organs.

Mary said: "The opt-out system would be so much better. There would be more organs available and less people dying.

"If it happened to you, if you knew tomorrow that one or two of your children, or your husband or your wife needed a transplant you would be praying that you would receive that organ in time.

"Praying. And you would be happy and desperate to accept that organ. So if you are happy and desperate to accept an organ why would you be reluctant to donate an organ?"

Mary, a midwife at Wishaw General Hospital, found out on the same day that both her children were suffering from restrictive cardiomyopathy, which means the heart is restricted from stretching and filling with blood properly. There is no cure but a transplant offers the best hope of survival.

She said: "Rachael had started school in the August before. Every night I was coming in from work and she was sound asleep.

"She never used to like to walk. She could be writing with a pen in her hand and the next minute she was sleeping. After a few months I was getting a bit more concerned.

"My husband had a blocked aorta when he was born, which wasn't picked up and he was very tired.

"A lot of the symptoms were similar."

Mary's son Stephen, in contrast, was very active, and a promising footballer, but was taken for emergency tests after he collapsed twice. However the doctors diagnosed asthma and told the couple not to worry about Rachel, saying that young children often tired easily.

The couple pushed for further tests though and the children were both diagnosed with the rarest form of cardiomyopathy. The doctors asked if they could carry out tests on dad Andy and discovered he had the genetic condition.

Days after the diagnosis the couple were told the children would require new hearts.

Stephen, then 11, was put on the transplant list first, then Rachel, 7, became ill and went on the list, months apart.

Eight days after Stephen's name was put on the list in November 2007 the family got a call to say a donor had been found.

The operation was carried out at the Freeman hospital in Newcastle where the UK's first successful heart transplant on a child was performed in 1987. In August the following year the family were back at hospital for Rachael to have a transplant.

Mary said: "Stephen was really lucky, he waited two weeks but he was 11 and there weren't a lot of children waiting. Rachel was a bit longer."

Two years after the children had their transplants, Andy's health deteriorated and he was put on the list. He waited a year for his transplant but sadly died during the operation at the Golden Jubilee Hospital in Clydebank on June 5, 2010.

Mary said: "We were very aware of the risks of the operation but Andy was very unwell. His quality of life wasn't great. He had a motorised scooter. If things had went well, he could have had a good quality of life for 10 or 12 years. Without a transplant he wouldn't have seen 50."

It is now seven years since Stephen had his transplant and six for Rachel and both are doing well. Rachel is set to travel to Switzerland on a trip organised by a charity that runs adventure camps for children who have been through a transplant. Stephen is studying for an HND at college. However it is very likely they will need another transplant.

Mary said: "If is likely they will be adults then and the waiting list will be a lot longer because there are more adults needing transplants."

Mary has set up a Facebook group heart2heart to promote organ donation and the opt-out system.

Earlier this month, Anne McTaggart MSP launched the Proposed Organ and Tissue Donation (Scotland) Bill, which proposes the introduction of a soft opt out system of organ donation in Scotland, where families are still consulted about the final decision.

The Scottish Government has until 4.30pm on February 5 to indicate whether it (or the UK Government) is intending to introduce any equivalent legislation. If not, then the cross-party support Anne McTaggart has received will allow her to introduce a Bill.

Mary said: "Most people say they aren't on the organ donor register because they are too busy to sign up.

"I've never spoken to anyone who has said they wouldn't do it. I know there are some people who don't want to but that's why it's an opt-out system.

"If you feel strongly enough about something then you will do something about it and you will opt out.

"The people who are quite happy that haven't had time to sign up, then they will have no problem."