Almost five years after the O'Reilly family buried the body of baby Michael, they are preparing for a second funeral for him.
For many families, the rollercoaster experience of life with a baby with chronic cardiac and intestinal problems would be enough heartbreak and emotional turmoil, but for the O'Reillys of Carlow, the nightmare has begun again with the revelation that, unknown to the family, medics removed the heart and lungs of the then 22-week-old baby during a post-mortem examination.
The organs of countless other children, taken without the knowledge of their parents, have been incinerated in line with policy at Our Lady's Hospital for Sick Children in Dublin. However, baby Michael's organs, for some unknown reason, were left in storage at the hospital.
His parents, Fionnuala and Bernard O'Reilly, were told this three weeks ago when they demanded a meeting with medics at Our Lady's, following media reports that children's organs had been removed without parental permission.
"When we asked why Michael's organs were still being kept, we were told that it was something as random as being placed on the wrong shelf," Ms O'Reilly said.
"It was so offensive. The randomness, the indifference, the indignity for this child, who fought so long and so hard to retain those organs. It is just unspeakably harrowing."
The hospital has recently purchased a plot at Glasnevin cemetery. It offered to incinerate Michael's heart and lungs and scatter the ashes there. The O'Reillys requested this week that the remains be returned to them for burial.
However harrowing the O'Reilly case is, they at least can have a funeral, according to Ms Charlotte Yeates. Her five-year-old daughter, Lorraine, died in 1985 at Our Lady's Hospital after a life dogged by heart problems.
She learnt only in April that Lorraine's lungs and heart were removed during the post-mortem, without her mother's permission. She has been told the organs were incinerated.
However, both women praised the care their children received at the hospital when they were alive.
Our Lady's Hospital insisted yesterday that in certain cases the post-mortem was incomplete without the retention and subsequent evaluation of an entire organ. "This is the universal practice of all hospitals and does not imply the retention of organs for research," the hospital said in a statement.
When Ms Margaret McKeever's 14-year-old daughter, Sin ead, died at Our Lady's Hospital in 1991 as a result of heart problems, she was asked, and agreed, to donate her corneas.
However, she was not informed that her heart was removed during the post-mortem. She learnt of this only three months ago. The heart was stored for 12 months and then incinerated, she was told.
She has now vowed to join Ms O'Reilly and Ms Yeates in their campaign to help other families in this situation.
"I owe it to Sinead," Ms McKeever said. "After finding out what happened I went home and took out her picture and said: `Well, chicken, I did my best, I tried. I do not agree with what they did to you and I told them so'."
The three women have formed Parents for Justice - A Voice for the Children who Cannot Speak. It aims to support those who find themselves in similar situations. They can be contacted at the following numbers: Fionnuala O'Reilly, (0503) 30696, Charlotte Yeates, (01) 450 8194, or Margaret McKeever, (01) 451 8023.