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Sunday 26 January 2020

'Nothing has changed' - mum's anger over kids' transplants

Maria Coyne with a photo of her son Gavin
Maria Coyne with a photo of her son Gavin

A mother whose 10-year-old son died nearly three years ago while waiting for a heart transplant is angry that an "opt-out" donor system has not been introduced and children still have to travel to the UK for the life-saving operation.

Maria Coyne, from Clarehall, Dublin, will mark the third anniversary of her son Gavin's death next month.

She said she believed "matters wouldn't have improved" for other children since her son's death, but fears it may be a decade before heart transplants are available here.

"We're approaching what will be the third anniversary, and it's exactly as it was when Gavin died," she said.

"There's been no changes in the transplant service and we still haven't got our 'opt-out' system.

"Health Minister Simon Harris promised to do that in 2019 and he hasn't done it. I don't know what's happened with it."

Last May, the minister said an "opt-out" system could transform organ donation in Ireland.

The system would mean people would automatically have organs donated after death unless they opted out.

Frustrated

Mr Harris previously said a vital part of a new human tissue legislation bill was the regulation of the removal, retention, storage, use and disposal of human tissues for the purpose of transplantation.

Ms Coyne said she is frustrated that there has been no movement on children's heart transplants.

Gavin, who died in February 2017, aged 10
Gavin, who died in February 2017, aged 10

Families still have to travel to the UK to have heart and liver transplants carried out.

"I don't know why this is still the case," she said. "But I believe it's down to a lack of consultants, money and a lack of staff in general.

"I believe they could do transplants for children here at the Mater Hospital - this is just down to money, mostly, I feel.

"It's frustrating to know nothing has changed since we lost Gavin."

Gavin died in February 2017 at the Freeman Hospital in Newcastle.

The Holy Trinity Primary School pupil had been diagnosed with heart failure after a family holiday to Florida.

The bright schoolboy had been admitted to Crumlin Children's Hospital. He underwent a series of procedures and was awaiting organ donation.

Gavin was transferred to the UK to be placed on a heart transplant list, as Ireland has no such service for children.

His family had to arrange their own travel there and back.

He passed away in Newcastle while awaiting a transplant, and the fact Gavin died in England impacted the family's grief even more.

In March 2017, officials from the Organ Donation and Transplant Ireland office met medical staff at Crumlin children's hospital to discuss setting up a paediatric heart transplant scheme. However, nothing tangible developed from this.

"I think it's the system itself, the HSE is a bigger entity than Simon Harris," Ms Coyne said.

"It feels like the HSE are pinning all their hopes on the new children's hospital, but they won't do transplants in the new hospital either.

"All of that money and they're still going to send kids to the UK.

"Three years down the line, all we're told is talks are ongoing, but one consultant told me it won't happen for at least 10 years.

"I feel money is a priority ahead of need."

She said Christmas was "another year gone without my son. I just wait for it to be over".

"And when the anniversary passes, I think I'm over that day, I'll be fine, but then I realise, no, I'm still in the same situation," she added.

"I think the day will come when it'll feel less hard, but it doesn't. Then we watch the huge amount of spending on the children's hospital, and know there's still no provision for transplants in Ireland and still it will cost the taxpayers to send their kids to the UK. It doesn't make any sense.

"This could be anyone's child tomorrow - we had no warn- ing - it was out of the blue."

A Department of Health spokeswoman said: "Work is progressing on the drafting of the Bill in collaboration with the Office of Parliamentary Council. Pre-legislative scrutiny of the general scheme was undertaken by the Joint Oireachtas Committee on Health on October 16, 2019, and the committee's report has not been received.

"When the report is received, the department must consider its findings and conclude drafting. It remains the intention to publish the Bill by the end of Quarter One 2020.

"It is hoped the Bill will then be progressed through the Houses of the Oireachtas.

Frustrated

"Kidney transplants are carried out in the Children's Health Ireland, Temple Street, while Irish paediatric patients travel to the UK for heart, lung and liver transplants.

"Organ Donation and Transplant Ireland has advised that the current practice in regard to liver and lung transplants is working well, and a change is not envisaged.

"Children's Health Ireland, Crumlin, has advised that they do not currently have the capacity to provide a paediatric heart transplant programme.

"The possibility of heart transplants for paediatric patients being undertaken in Ireland may be considered in the medium term, in the context of the construction of the new children's hospital at St James's campus. If any change was to be pursued, it would take a considerable time to implement."

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