Families who found out that the organs of their dead babies were incinerated overseas without their consent or knowledge have held an emotional protest outside Cork University Maternity Hospital (CUMH).
The protesters included Leona Bermingham and Glenn Callanan, alongside their son Lewis, who was born on September 18th, 2019. The couple lost their son, Lee, who was a twin to Lewis, the day after the birth.
The couple had been told at the 16-week scan there were complications with one of the twins, and the outcome of those complications would not fully be understood until they were born.
Lee was placed in the neonatal unit after his birth but he deteriorated rapidly. The family managed to have Lee baptised alongside his brother before he died in the arms of his mother.
Ms Bermingham said the couple were encouraged to have a postmortem examination for Lee. They decided to donate his organs for medical research in a bid to find meaning from the tragedy and in the hope of helping other families. However, they were supposed to get the organs back for burial.
She said in May 2020 she got a call from the hospital to say that the organs retained at the postmortem had been incinerated. Her heart felt like it “split in half,” she said.
“You already don’t know how to deal with being happy for having one baby and heartbroken for [losing] another. I would do absolutely anything to have them growing up hand in hand. Every milestone Lewis takes – it is bittersweet. We are so happy and lucky and proud of Lewis but I would do anything to see him going to pre school or the park with his brother.
“And then this happens. When we found out we didn’t know what to feel.
“Right now our focus is on getting answers [from the hospital]. There is no compassion anymore. We are just a number. They are not thinking of us as families.
“We are here to get answers as to why this happened to us all. We won’t go away until we get those answers. None of us want to be out here protesting. We all wanted to grieve for our children behind closed doors.”
Ms Bermingham said her pain was further compounded when she found out that what had happened with Lee was not an isolated incident.
“This did not help the grieving process. It has put a pause to our grieving process. I asked myself: ‘Why did I donate his organs?’ It took the goodness away.
“We found out through the Freedom of Information Act [that other families had been impacted]. It was basically an email saying that senior staff were going to have a light breakfast to discuss how they were going to tell the 18 families involved. I couldn’t imagine 17 other families feeling like us. When were are all together they will have to listen to us.”
The impacted families are calling on the Health Service Executive to publish the findings of a report in to why multiple organs of 18 dead babies, all born at the hospital, were sent to Belgium for incineration without the knowledge or permission of their parents.
Laura Kelleher returned to Ireland from Australia to join the protest. Her stillborn baby girl, Hope, was delivered at the hospital at the 25-week mark on November 3rd, 2019.
Ms Kelleher said that she and her husband Fintan had made the journey to Cork from Perth in the latter stages of her pregnancy. She spent about three months in hospital after she experienced complications in her pregnancy.
On October 31st, 2019 the heart of their little baby girl Hope stopped and she was born stillborn three days later.
Ms Kelleher said they called their baby Hope as that was all they had in the latter stages of the pregnancy when complications arose.
The couple returned to Perth in January 2020 after the postmortem was completed.
"We signed a consent form that once the organs were released that they would be buried in the graveyard in the hospital. When we did return back to Perth that is what we thought would happen once the organs were released," she said.
The couple only received postmortem results for baby Hope in September 2021. She had died of natural causes, but the couple said the delay in receiving the results was in itself agonising without the trauma that followed.
They then received a phone call from a staff member at the hospital in September 2021, the day an RTÉ Investigates documentary on the matter was due to air. However, Laura said they only found out about the incineration of the organs of baby Hope via social media.
Ms Kelleher said she still finds it hard to believe that the incineration took place. "We thought the service we were getting from the hospital was fantastic. And all that time it was just a let-down. They could have said it straight out what happened."
"On the [RTE Investigates] programme there was a document and we saw there was a date on it which was the date of Hope's postmortem."
The couple then contacted CUMH to ask if Hope's organs had been incinerated and they were informed that was the case.
Ms Kelleher said they still want answers and are awaiting the publication of a review.
"We keep being told that they have answers but they are keeping us waiting.”
Meanwhile, Katie Quilligan, another of the impacted parents, said they “want to know who signed off on this and why.”
Her baby boy, James, died two days after he was born prematurely at CUMH in January 2020.
She only found out what had happened to James’s organs after his death the night before the incineration story broke on RTÉ Investigates.
“It was heartbreaking and we were clueless about what to do next. I didn’t sleep for two weeks, just trying to process what we had learned. I was ringing the hospital and my own doctors trying to get answers. And we’re still waiting for answers.
“I don’t think I’ll be able to fully accept or process what happened until we get those answers. Waiting is like going through the grieving process all over again.
“The HSE is letting us down – the parents who are involved in this, and 18 babies.”
When the revelations were made on the RTÉ programme, the HSE vowed to have an independent review. However, the parents say they are still waiting for the report.
Waiting for answers
Katie said they were first told they would have answers by last November.
“But November has come and gone, and we are well passed it now and we are still waiting for answers,” she said.
“The first draft is ready but we’ve been told that the HSE is under legal advice not to give it to us. The fact that it’s even gone to legal advice is worrying. What have they found, what’s going to come out. They should just tell us what happened.
“This has caused a lot of depression and anxiety. But I am now driven to get the answers for my son’s sake. And until we get them, I'm not going to be quiet. I want my baby’s voice heard and the rest of the babies too.”
Another impacted parent, Sarah Jane Connolly, said she wants answers for her little girl Nora. “We all do. She can’t stand up for herself, she’s not here,” she said.
In a statement, the South/Southwest Hospital group said the external review commissioned by the hospital is ongoing.
It said: “The review team has and continues to maintain regular contact with the families who participated in the review. Once completed the final report will be shared with all relevant stakeholders including the families involved.
“It would be inappropriate to comment while the external expert review, which was commissioned by CUH is underway.
“Equally CUH must respect the confidential nature of patient information and cannot make public comment or provide details associated with same.”