Diffuse Intrinsic Pontine Glioma (DIPG) is an extremely rare childhood cancer, with fewer than five children diagnosed each year in Ireland. Just 22 patients were treated for the condition.

The mother of a boy whose condition changed dramatically following a brainstem biopsy today says: “I watched my son fade away twice.”

Brody Doyle, nine, passed away last year after being diagnosed with the rare and inoperable brainstem cancer Diffuse Intrinsic Pontine Glioma (DIPG).

The Dublin boy’s deeply emotional story was raised in the Dáil this week as concerns were voiced about the number of high-risk biopsies being carried out on children in Irish hospitals.

A biopsy is a procedure in which a small tissue sample is removed for examination under a microscope.

But Brody’s final months with his family were marked by serious complications after a biopsy on the tumour in his brain left him unable to move, speak or swallow.

Mum Kirsty wants to share her son’s story in the hope that another family will never have to experience what they went through.

She is calling for stronger safeguards around informed consent to ensure families receive a full explanation of any suspected diagnosis before a high-risk biopsy is performed.

Kirsty also believes doctors should clearly explain the potential benefits and risks of procedures before consent is given.

She wants multidisciplinary reviews involving teams of specialists to become mandatory before biopsies are carried out in high-risk cases involving the brain.

Kirsty told The Irish Sun: “I don’t want Brody’s life and everything he went through to be in vain.

“If we can spare one more child and one more family from experiencing what happened to Brody, then it wasn’t all for nothing.

“My son was already facing a life-limiting diagnosis, but what happened after that biopsy changed the time he had left. Instead of making memories, we were trying to teach him how to eat again.

“We can’t change what happened to him now, but we want answers from the Government and Children’s Health Ireland.”

Brody had experienced balance problems and issues with his eyes for years before a scan eventually found a tumour on his brain in May.

The scan was carried out on the Friday of a bank holiday weekend.

Doctors believed it was the rare cancer DIPG, which is inoperable and life-limiting, but wanted to perform a biopsy to confirm the diagnosis.

Shortly after the procedure, Brody experienced a major brain bleed, leaving the little boy in critical condition.

Mum Kirsty said the aftermath of the procedure was “every parent’s worst nightmare” as her son lost the ability to move.

She added: “Brody came through the corridor from the theatre into the ward and I just knew something was wrong.

“He was making this grunting sound. He was already unable to move. He couldn’t talk. He experienced a seizure. I was screaming through the hallways. It took them about an hour and a half to revive, intubate and stabilize him. He was having a major brain bleed.”

Through treatment and rehabilitation at the National Rehabilitation Hospital in Dun Laoghaire, Dublin, Brody gradually regained some speech and movement.

Kirsty said: “Brody was in Temple Street for five months. He fought with incredible determination. He was fully aware but he couldn’t move.

“I knew he was in there. He couldn’t talk. He couldn’t walk. He couldn’t eat. He could move one or two of his fingers.

“He started rehab and reached a point where he was beginning to eat soft foods again, his hands were moving, and eventually some speech returned.

“When we moved to the National Rehabilitation Hospital, they were amazing. They helped him make incredible progress. We even got Brody standing with a walker. It was pure determination from him.

“I watched sweat roll down his face as he tried to lift bean bags. He showed unbelievable strength.

“He spent eight months in rehabilitation, but over the following months his condition gradually worsened. Three weeks after we left the NRH he developed new symptoms and the cancer had progressed.”

Within weeks, Brody lost all the abilities he had worked so hard to regain. He passed away on August 15.

People Before Profit TD Paul Murphy raised Brody’s case in the Dáil this week.

He questioned the oversight surrounding biopsies performed for serious brain conditions.

The Dublin TD said: “Over the summer I met with Kirsty and Barry, who shared a deeply emotional story about their son Brody’s care at CHI.

“He was diagnosed with DIPG in May. This is a very aggressive brain tumour that cannot be removed with surgery, and children receive supportive care following diagnosis.

“He then underwent a highly invasive and high-risk biopsy. Following the procedure, he experienced a major brain bleed and swelling that required emergency surgery to relieve the pressure.

“He walked into the operating theatre able to move all of his limbs. After the biopsy, he could move only one of his eyes, and he never regained the ability to walk.”

Source: The Sun