Plans to establish child heart transplant programme

Concerns over current arrangements requiring children to travel to UK for operations

The clinical expertise to set up a heart transplant programme for children and carry out the operations now exists in Ireland, according to Prof Jim Egan, director of Organ Donation and Transplant Ireland. Photograph: Hugh Macknight/PA Wire
The clinical expertise to set up a heart transplant programme for children and carry out the operations now exists in Ireland, according to Prof Jim Egan, director of Organ Donation and Transplant Ireland. Photograph: Hugh Macknight/PA Wire

Plans are being made to establish the first Irish heart transplant programme for children, amid safety concerns about current arrangements that see patients transferred to England for their operations.

Officials from the Organ Donation and Transplant Ireland office met medical staff at Our Lady's Children's Hospital earlier this month to propose setting up the State's first paediatric heart transplant programme.

The clinical expertise to set up a programme and carry out the operations now exists in Ireland, according to Prof Jim Egan, director of Organ Donation and Transplant Ireland. Discussions are ongoing with UK authorities about formal arrangements for sharing donated organs between the two jurisdictions, he said.

Although individual paediatric cardiac transplants have been carried out in the Republic in the past, there is no programme and children are generally sent to London or Newcastle for their operations. This is due to the low numbers involved – about a handful a year – and the low number of donor hearts that come available.

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Died waiting for transplant

Last month, 10-year-old Gavin Coyne died in England while waiting for a heart transplant, after which his family called for a paediatric transplant unit here.

It has also emerged that children awaiting a transplant in the UK cannot be guaranteed transport within the required time frame due to staffing difficulties in the Air Corps.

Prof Egan said that while no problems had arisen on specific transports, there was a risk and the situation was “challenging”. “If you’re trying to get a child requiring a new heart from Galway to London within four hours and there’s a storm, that’s not easy.”

Fourteen children were referred to the UK last year for heart transplants. The HSE paid the UK’s National Health Service over €500,000 for the service in 2015.

Crumlin hospital would have to be approved as a transplant centre by the Health Products Regulatory Authority before any operations could be performed there. Dr Egan estimated it could take several years before the programme became a reality.

Meanwhile, Minister for Health Simon Harris said proposals for the creation of an opt-out system of consent for organ donations will be brought to Cabinet shortly.

Mr Harris said the proposals, replacing the current system whereby potential donors have to opt in, would be developed as part of an over-arching policy on human tissue. A public consultation on the proposals would be required first and this will be launched before the end of the summer.

Donor opportunities

Very few people die in circumstances where their organs can be used for transplants so it is incumbent on policymakers and doctors to ensure all donor opportunities are followed up and that they lead to transplants, where possible, according to Mr Harris.

Speaking at the launch of Organ Donation Awareness Week, the Minister suggested the donor population could be expanded by extending criteria for donations, extending the age of potential donors and using medical technology to harvest organs not previously considered.

A record 50 kidney transplants were carried out last year using organs provided by living donors. Overall, 280 organ transplants were carried out, the second highest yearly total since the programme began. A further 16 Irish patients, including nine children, received transplants in the UK.

Last year saw 172 kidney transplants, up from 153 in 2015. The highest number was recorded in 2013, when 185 kidney transplants were performed.

Finding deceased donors has become more difficult with the fall in road traffic deaths over recent years, but the living donor programme continues to grow. Last year, there were 77 deceased donors and 50 living donors, up from 33 in 2015.

In addition, 58 liver transplants were carried out at St Vincent's last year, along with 35 lung transplants and 15 heart transplants at the Mater Hospital.

Organ Donor Awareness Week runs from April 1st to 8th.

Paul Cullen

Paul Cullen

Paul Cullen is a former heath editor of The Irish Times.