HSE blamed for confining boy to hospital

A DUBLIN hospital says it is unable to discharge a 14-month-old boy, who has been confined there since birth, because the HSE will not fund the home care package he needs.

A spokeswoman for Temple Street Children's Hospital said Chris Joe Mathew, of Ringsend, Dublin, had been ready to go home since September.

But "he must have a home care package, including a carer for a few hours each day and a fully-trained nurse every night before he can be safely discharged," the spokeswoman said.

The child's parents, Bincy and Santosh Mathew, have been told there will be no funding for a care package in 2009. Originally from India, the couple have been living in Ireland for several years.

Bincy works as a midwife three days a week in Holles Street, while Santosh, an accountant, has given up his job to be with his son every day.

Bincy explained that Chris Joe was born prematurely last year and was doing fine until he was about a month old when he developed chronic breathing problems.

He had a series of operations, was put on steroids, got taken on and off a ventilator and last December was transferred to Temple Street. He had a tracheostomy in March.

He is now connected to a ventilator, attached to a tracheostomy tube in his neck. The tube from the ventilator needs to be changed once a week, and the tube in his neck must be suctioned every 10 to 15 minutes.

"He cannot be left alone for even five minutes," said Bincy. If the tracheostomy tube gets blocked the person with him has about two minutes to suction it or Chris Joe will stop breathing.

His breathing is now strong enough that he can come off the ventilator twice a day for up to 85 minutes, though the tube in his neck still needs to be suctioned. Bincy said: "They said when he could come off the ventilator twice a day he could come home," adding that was in September.

Bincy and Santosh have been trained to do the suctioning, and the HSE has provided a ventilator and nebuliser for the family home. "Usually the parents do the suction during the day and a nurse comes at night. But the HSE say they don't have the money, so he must stay in hospital."

Colm Young, of the Tracheostomy Awareness Group, said he was aware of "about 10 children" in Chris Joe's situation between Temple Street and Our Lady's Hospital for Sick Children in Crumlin.

Currently the toddler, who appears a bundle of health were it not for the long tube attached to his neck, seems happy, smiling and enthusiastic to greet anyone who enters his small room in St Patrick's ward.

He gets home for a few hours once a week.

"We are hoping to bring him home for few hours on Christmas Day. No, he has never spent a night at home," says Bincy, shaking her head.

Nor has he ever been in a supermarket, a coffee shop, or for an outing in his buggy with his parents.

Either Bincy or her husband arrive at Temple Street every morning and one of them is with him until about nine each night.

"It is exhausting," she says. "We don't have any idea what to do. The hospital is doing its level best, even the CEO is fighting for us. It is the HSE who say they have no money to help us."

A spokeswoman for the HSE said it endeavours to provide home care packages within the available resources.