A young Dublin mother is worried her baby son could die unless the Health Service Executive (HSE) provides the special-care package at home which Temple Street children's hospital says he needs.
Edel Rynne, a single mother living at her family home on Dublin's northside, brought her son Clayton (aged 17 months) home from the hospital eight weeks ago.
She brought him home in frustration, she says, because despite being given several weeks' warning by Temple Street that Clayton would need 70 hours per week nursing care at home, the HSE failed to put a package in place. She delayed bringing him home waiting for the package.
"In the end I couldn't leave him there any longer. The hospital have been great, very supportive. It's the HSE that's let us down."
Clayton developed chronic lung disease and pulmonary hypertension a few weeks after his birth. He has suffered cardiac respiratory failure and is dependent on a breathing machine attached to a tracheostomy tube in his neck. He is also fed through a tube inserted through his nose.
The breathing tube needs to be suctioned every two hours "day and night", according to Edel.
Edel and Clayton sleep in the kitchen - there is not enough space in any of the bedrooms for them as well as the ventilator and other equipment. Someone has to be with him all the time in case his breathing tube gets blocked. If it gets blocked, Edel has three minutes to change it or Clayton will die. "An alarm goes off if that happens. I am afraid at times that some night I'd be so tired I'd sleep through it. I suppose I wouldn't. I don't really sleep."
She has been trained in such skills as suctioning, changing tubes and working the ventilator.
Cathy Roche, a specialist nurse at Temple Street, says the inadequate provision of special care for children such as Clayton is an ongoing issue.
The Tracheostomy Advocacy Group was started to lobby for an agreed protocol between the children's hospitals and the HSE, to provide care packages when tracheostomy children are discharged. A spokesman for the group told The Irish Times the provision of such care packages was "pot luck". Where care packages were not provided children, who could go home, were being kept in hospital, said Ms Roche.
"We had another case last year where the local HSE was informed in June that a child would be going home at Christmas." At the end of the year still no care package was in place and the child stayed in hospital until February when in frustration his parents brought him home.
A spokeswoman for the HSE said it was working with the Rynne family to put a care package in place.
A spokeswoman for Temple Street said there was no ring-fenced funding for home care packages for children. "But we are working with the HSE and the other paediatric hospitals in developing a funding strand for these patients," she said.
