‘Nobody wants to help,’ claims mother of boy reliant on nasogastric feeding 

Niamh Griffin Story: Alfie Murphy, age 19 months, has global developmental delay and cannot take food by mouth. Picture: Rebecca Murphy

The mother of a toddler living with challenging developmental delays has claimed that “nobody wants to help” as he struggles with eating.

Rebecca Murphy from Wexford fears that Alfie, who is 19 months old, has fallen between two stools, with his care split between their local hospital and Dublin.

Alfie needs nasogastric tube feeding because he cannot take food by mouth. 

His mother said: “There’s literally nobody that wants to help. The nasogastric is supposed to be only very short term. You’re looking at maybe eight weeks maximum, and he’s had it in since February.”

They move the tube regularly, but she said: “He had to get antibiotics because he has a massive rash now on his face from it.”

His care is under Wexford General Hospital and Children’s Health Ireland (CHI) at Crumlin children’s hospital. However, she understands the dietitian in Wexford is on leave. She has also tried the primary care service, she added.

“This is not just about one child,” she said. “It is about a wider failure in disability and paediatric services where children with complex needs are passed between hospitals, community services, and waiting lists while families are left to co-ordinate care themselves.”

Instead, the family has turned to two private therapists. They advised that Alfie needs urgent assessment for PEG feeding as a long-term solution. PEG stands for percutaneous endoscopic gastrostomy, or feeding directly into the stomach through a small tube.

“We’ve had no choice but to go privately,” said Ms Murphy. “We were just handed the feed and told ‘go read the back of the tin’ but for a child who is 100% dependent for his life on nasogastric feeding, it’s totally unacceptable.”

Alfie is the couple’s third child, but the first to need this assistance. Their older children are autistic.

“It’s very frustrating,” she said. 

We’ve been passed from one hospital to the next, and nobody wants to take any responsibility for Alfie.

She is seeking a referral for gastroenterology, and understands that the team in Wexford wrote to CHI on June 18 but have not heard back.

She described a challenging situation this year when she took Alfie home from CHI at Crumlin without signing medical discharge forms.

“In my opinion, he shouldn’t have been released without a nasogastric tube,” she said.

Due to not signing the form, she said that evening a garda arrived at her house to check Alfie was indeed medically stable. She understands he was requested to do this by CHI.

The toddler was later admitted to Wexford General Hospital in crisis.

Alfie also has care for other issues in CHI at Crumlin, which Ms Murphy described as “excellent”, leaving her baffled at these delays.

Ms Murphy has approached Sinn Féin for help. The party’s health spokesman David Cullinane then wrote to the regional executive officer for HSE Dublin and South-East.

“This exposes wider systemic concerns regarding the provision of paediatric dietetic and specialist feeding services across the South-East,” he said.

He also raised concerns about co-ordination of care between CHI and regional centres.

HSE Dublin and South-East, as well as CHI, were approached for comment.