Cavan families voice hurt over babies’ organ retention

Legislative Change demanded by bereaved parents

Bereaved parents of Cavan babies who died at childbirth and whose organs were subsequently retained are calling for a change to the law and greater transparency regarding Ireland’s post-mortem practices.

Six years ago this week Paula and her husband Jonny Doyle received the results of an autopsy carried out on their son, Tadgh, stillborn at Cavan General Hospital on June 4, 2016.

Such is the online etiquette of modern algorithms; the family were reminded of this tragic anniversary last Monday, November 7, by their social media.

There was, says Paula, nothing in that report notifying that Tadgh’s brain and left lung were retained.

“No indication to say why they’d be kept. Everything had looked the way it should,” she explains.

National outcry

Last week she and husband Jonny appeared on RTÉ Investigates to share their experiences, long after national outcry in the mid 2000s when it emerged that dozens of child organs were held without families’ knowledge or consent.

“I was sitting in Ballyjamesduff town diner having a cup of coffee,” says Paula, remembering the phonecall in November 2017 to say she had filled out a form “incorrectly”.

Provided to Paula in the hours after baby Tadgh’s birth, the form provided two options - for the Doyle’s to get the retained organs back; or for the hospital to dispose of them.

“You’re talking 10 hours after maybe giving birth. Obviously I went into hospital expecting ‘here’s your happy and healthy baby’, and not in a million years that ‘sorry, but your baby’s dead’. So I was still in complete shock,” says Paula, who in that sickening blur “ticked both boxes”.

“I wasn’t in a fit state to make decisions... The autopsy was on a Tuesday, Tadgh was returned to us on Wednesday. I got an aunt to dress him. I didn’t want to look, and we buried him on a Thursday.”

A HSE review of post-mortem practices in 2019 found multiple baby organs were sent abroad for incineration without parental knowledge or consent. This caused yet another scandal.

Baby Tadgh’s organs were not among those destroyed but, still to this day, Paula does not know why her son’s were ever retained “when the autopsy didn’t show anything out of the ordinary”.

Baby Conor

A similar situation occurred in respect of baby Conor James Whelan.

Like with baby Tadgh, a verdict of ‘medical misadventure’ was recorded at the inquest into his death.

Baby Conor died just 17 and a half hours after being born at Cavan General, on May 14, 2014.

His death was one of five babies at the hospital since late 2012, and the second in as many weeks between April-May 2014.

Conor’s parents, Siobhan and Andrew Whelan say they “were informed” a coroner’s post mortem was instructed, and it “possibly would be necessary” to retain some organs “in the determination of cause of death”.

Still “gravely ill” following Conor’s birth, and struggling to come to terms with their loss, Siobhan says she and husband Andrew “just nodded our heads. We didn’t question anything at that moment in time.”

Conor was buried two weeks later, with still “no word” of when his organs might be returned.

“What bothered us after is why his organs were even retained?” Siobhan tells the Celt.

It wasn’t until the end of August 2014 that Conor’s organs were returned.

Doubt

“Doubt” meant the Whelans felt they couldn’t reunite their son with his organs straight away.

“We had distrust in the whole process,” says Siobhan, who made arrangements to put Conor’s organs into special storage in case they were needed for further independent pathological examination.

In hindsight, Siobhan believes that the “blocks and slides, or cassettes” of blood samples were enough to assist the necessary microscopic review.

She too asks: “So why is it [retention] still happening? The post-mortem examination was done as early as June. The last piece of the jigsaw was the blood analysis. Why make us wait?”

She feels there is a “lack of transparency” as to why organs were retained.

“I don’t think they’re being upfront with families,” she says pointing to the National Bereavement Standards, updated in 2022, outlining that families must be given written information about the need and reasons for organ retention, and return of same. “It comes back to open disclosure, and transparency.”

Last month the government was again asked for an update on planned legislation. The human tissue (transplantation, post-mortem, anatomical examination and public display) Bill was first proposed in May 2019, but has its origins in a report published as far back as early 2006.

The response given was that approval for publication “will be sought as soon as possible and is expected this Oireachtas term”.

Like Paula, Siobhan believes its introduction can’t come soon enough.

“There are a lot of families in Cavan, this whole region, Monaghan, running into North Meath and possibly some of Westmeath as well, that have been affected by organ retention where babies have died unexpectedly, adverse or not,” says Siobhan.

“We think that organ retention is not necessary, and should not be happening where a perinatal post mortem is already carried out. For whose need or research is it still being facilitated? The human tissue Bill must be legislated for now, without delay. The trauma of losing a child can never be adequately be put into words, but to then be re-traumatised with the mental hurt and torture of having them reburied...”

Answers

“We wanted answers,” says Paula of her family’s drive to ensure accountability in relation to all matters concerning baby Tadgh’s tragic passing, and the retention of his organs thereafter.

The family still have a case outstanding against the HSE.

They hope for a conclusion sometime next year, but as Paula says of the timeframe: “How long is piece of string? You never know how long these things can drag out for.”

Baby Tadgh’s organs were released to his family after the inquest concluded last year. On March 9 last, Paula and Jonny arranged for their collection and for a short funeral to take place.

“We had to reopen the grave. It was really tough. I had dropped our girls to school and I called by the grave on the way back to prepare myself. But just, when you see it open like that, I broke down at the car.”

They allowed RTÉ investigates to attend the ceremony, feeling it important that people are aware of the “all the realities” of what families like theirs have had to face.

“A lot of people won’t get it, and say why would you have it blasted all over the television. But we knew something like this needed to be done to have an impact because child loss, and still birth, these are all still very taboo in Ireland. People don’t talk about it.

“I’ve lost friends who’ve found it easier simply not wanting to acknowledge it. As sensitive as it is, we needed to be able to share this with the public. Unfortunately babies will die, because there are complications that can’t be prevented. But then you find that your child is dead because the hospital failed to follow protocols. You have to try get over that hurdle, and on top of that deal with being told actually ‘we’ve cut up your son and kept some of his organs.

“People in the real world never touched by child loss will never know any of this. But by us letting RTÉ film it, if you can get upset like you maybe would watching a Netflix series, this is real life too. This is my real life. Get upset about that as well.”