Belfast father faces difficult wait for organ donation law change

Mairtin Mac Gabhann with his five-year-old Daithi Mac Gabhann at their home in west Belfast. Daithi was born with hypoplastic left heart syndrome (HLHS) and now requires a heart transplant to save his life.

Mairtin MacGabhann, from Belfast, has been campaigning for the organ donation legislation reform. His son, Daithi, was born with hypoplastic left heart syndrome and has been on a waiting list for most of his life.

He said he is hopeful the bill will make it through the process, adding it passed the health committee scrutiny stage last week. The next steps include the consideration stage, further consideration stage and the final stage before Royal Assent.

“It looks like it is going well, and it’s looking like if it continues to go at this rate that we have a good chance of getting it through,”Mairtin MacGabhann said.

The proposed new legislation would mean all adults become potential donors unless they specifically opt out.

Northern Ireland is the only part of the UK where the opt-out system is not already in place.

Mr MacGabhann said watching the process has been nerve racking for the family.

“To hear Daithi’s name being mentioned whether it is on the Assembly floor or in the health committee it fill us with pride, but it is nerve racking listening to it because any slight delay or anything going against us, it could be detrimental,” he said.

“But we are quietly confident because we have worked so hard over the last three years, even when we didn’t have a government we were speaking to our politicians about this.

“The biggest thing going against this law being changed is time.”

Daithi may only be four but he is aware of the situation, his dad said.

He has been on the waiting list for a new heart for over three years, and thought to be one of the children waiting longest in the UK and Ireland.

“Daithi knows he needs the gift of a new heart and he knows that he is different from his friends, just the other day he asked his mummy when he gets his new heart will he be able to run as fast and as long as the other kids in his class, which is heart breaking but shows that he knows what is going on, and he knows that when he is going up to Stormont, he is going to the castle to talk to the important people who could maybe have a hand in improving his chances of getting the gift of life, and helping those who are going to need the gift of life in future,” Mr MacGabhann said.

“It’s going to take time for this to take effect, so better it starting as soon as possible so we’ll see the benefit, even in five years’ time. We’ve seen the statistics with England introducing this, and Scotland where the new law change was linked with a record number of heart transplants.

“We’re seeing all the countries around us bringing this in and seeing the benefits, we just want to be a part of that. It might only save a small number of lives, but if it even saves one life it is worth it in our opinion.”

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