Father of baby whose organs were incinerated pleads with politicians to pass bill 

Laura and Fintan Kelleher, who live in Australia, are among 18 families whose babies’ organs were sent to Belgium from Cork University Maternity Hospital for incineration in 2020, without their permission or knowledge.

The father of one of the 18 babies whose organs were sent abroad for incineration is asking politicians to pass the Human Tissue Bill that has been approved by the Cabinet.

Health Minister Stephen Donnelly brought the Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill to the Cabinet on Tuesday morning for approval. It will now proceed through different stages in the Oireachtas.

The bill provides a legislative framework for the retention and disposal of organs used in postmortem examinations. It will also provide a statutory framework for organ donation and transplant services.

Under the legislation, people will be deemed to be organ donors unless they have registered their wish not to have their organs donated.

The families of the 18 babies whose organs were sent for incineration from Cork University Hospital have been calling for the publication of the legislation in recent months.

Fintan and Laura Kelleher’s baby daughter, Hope, was among the 18 babies whose organs were sent for incineration without their parent's consent or knowledge.

In recent weeks, the couple launched a petition demanding that the Human Tissue Bill be published by the Department of Health.

'Misguided decision'

Last Friday, a report from a review team set up to examine the circumstances leading to the disposal of the babies’ organs said the organs were incinerated abroad because of a "misguided" decision and a deviation from local policy and national standards.

Fintan Kelleher told the Irish Examiner: “If any good is to come from this, please pass this bill so that no other family has to go through this.”

Fine Gael senator Tim Lombard said the approval of the bill is the first step in the introduction of the legislation. He added: “It is an important day for families.” 

Stephen Donnelly described the piece of legislation as a significant one “that includes provisions around organ donation and transplantation, post-mortem practice and procedures in hospital settings, anatomical examination, and public display of bodies after death”.

Stephen Donnelly described the new legislation as significant.

He added: “Crucially, it will implement the recommendations of the Madden Report regarding consent provisions while the independent regulatory regime being established will help to ensure that the new best practice guidelines being developed by the HSE are complied with by every hospital across the country.” 

The 2006 Madden Report recommended that no hospital post-mortem examination should be carried out and no tissue retained for any purpose whatsoever without the informed consent of the family or next of kin.

In relation to organ donation, Mr Donnelly said: “A key priority for me in bringing forward this legislation is to support organ donation and transplantation in Ireland and to make organ donation ‘the norm’ in situations where the opportunity arises.

"This bill will help achieve this through the introduction of a soft opt-out system of consent and pathways for living organ donation and altruistic donation, all of which will help increase the donor pool in Ireland.”

Philip Watt, CEO of Cystic Fibrosis Ireland and chair of the Irish Donor Network, said that there are hundreds of people waiting for a transplant in Ireland and welcomed the new bill.

Mr Watt said: “It is important to note that those who object to organ donation, for whatever reason, can record their objection on a forthcoming online register and this decision will be fully respected.

"Equally, family members will always be consulted before any proposed transplant proceeds. This is very reassuring.”

He added: “Transplant and donor rates in Ireland have the significant potential to be improved by this legislation, if accompanied by the necessary resources and public awareness supports.”

Mr Watt said that the ‘gift of life’ makes a huge difference for people with lung diseases such as cystic fibrosis.

He said that there are currently around 120 patients with CF who have undergone double transplants.

Meanwhile, the Irish Kidney Association said that just around 1% of people die in circumstances where organ donation may be possible, which means dying in an intensive care unit.

The association said this highlights the limited possibilities for organ donation and the need for every potential donor to be identified and for consent to be given.

In a statement, the association said the role of family in consent remains an important one under the new proposals.

“Under the new legislation, the proposal is to bring in an opt-out register where people can register their wishes not to donate their organs and if they do so, there will be no further discussion with their family.

"For those who do not opt-out, the family will continue to play a central role but rather than being asked to consent to organ donation they will be asked if they know any reason why their loved one would not consent to organ donation for transplantation.”