Terminally ill child awaits HSE safe care-package

A two year-old girl, who is likely to die in childhood but who is well enough to leave hospital, cannot go permanently home as the HSE will not provide a level of homecare for her.

Jovelyn Maria-John, who has had a tracheostomy, needs 24- hour care. She cannot be left alone in case her tracheostomy tube gets blocked, which would result in cardiac arrest in seconds.

She was born in the Rotunda, Dublin, in November 2010 with serious health problems, including an opening in her diaphragm. Jovelyn had surgery on her diaphragm at 20 days at Crumlin children’s hospital and suffered numerous cardiac arrests in the weeks after.

Palliative care
In April 2011 she had a tracheostomy to enable her to breathe without a ventilator. However in June 2011 pulmonary hypertension was detected.

“We were told it would now be just palliative care,” says her mother Binu.

She and her husband John are trained to care for Jovelyn at home in Santry, to suction the tube if it becomes blocked.

Although she requires constant care, sometimes needing to be suctioned 10 to 15 times an hour, they were told they could bring her home in September 2011. They applied to the HSE for a homecare package and in September 2012 were granted four 10-hour home-nurse shifts a month. In January this was increased to six. The Jack and Jill Foundation stepped in and is providing 64 hours a month.

It means they can bring Jovelyn home from Tuesday night to Saturday morning every second week. Any more is deemed unsafe by the hospital, so Jovelyn spends the rest of her time in its transitional care unit.

The couple also have a son, Jovial (5), whom Jovelyn “loves to bits”. Binu drops him to school and goes straight to the hospital until Jovial finishes school. John, who works in IT, sees Jovelyn only when she is home and at weekends.

"Jovelyn knows on Saturdays, when we settle her down here [in the hospital], we are leaving and she gets very distressed. That is heartbreaking."
Monumental failure
Colm Young, chairman of the Tracheostomy Advocacy Group, described the case as "yet another monumental failure of the HSE to see financial sense".

It was “substantially more” expensive to keep Jovelyn in hospital than to care for her at home, he said.