THE MOTHER of a blind five-year-old girl with severe cerebral palsy, who is unlikely to live for more than a few years, has said she will have to leave her daughter in Tallaght children’s hospital as she can no longer care for her at home.
Hannah May (5), from Knocklyon, Co Dublin, had been receiving homecare from the Jack and Jill Foundation since she was born.
However, following last year’s decision by the Department of Health not to bridge a funding shortfall, the charity ceased homecare on January 1st for seven children over the age of four.
Since then, the HSE has failed to respond to repeated requests for a homecare package for Hannah.
“She was born at 31 weeks. She had three strokes and two heart attacks when she was born which traumatised her brain,” said Mary May, her mother. “She is totally paralysed and needs to be ‘peg’ fed directly into her stomach.”
Hannah was brought back to hospital on Monday – having been discharged at the beginning of March after a three-week stay for bronchial pneumonia – as she again had difficulty breathing. Ms May suctions Hannah’s airways, a procedure that clearly agitates the child. When she settles, her mother places the oxygen mask over her face.
Asked about a typical day, Ms May said Hannah wakes up about 4am with leg cramps. She sleeps downstairs as she has become too heavy to carry, and her mother has a camera on her so she can see her on a screen in her bedroom.
“At 6am she has her first meds and her first feed at 8am. Then her anti-epilepsy medications. She also has six ulcers in her tummy which bleed and she needs medication for that. I wash and dress her and bring her in her wheelchair into the kitchen.
“She has never spoken, though she can hear. She loves music and her grandad singing to her.”
Throughout the day Hannah receives 23 different medications.
Ms May has not had more than three hours’ sleep a night since the Jack and Jill Foundation’s night-nurse stopped coming twice a week. “Jack and Jill were absolutely wonderful. It meant I could go to the supermarket and get a night’s sleep. I am utterly exhausted now after three months on my own,” she said.
Carmel Doyle, spokeswoman for Jack and Jill, said since the HSE decided in December not to bridge a funding shortfall of €750,000 at the charity, it had to cut its services to all 253 babies on its books and was withdrawing services to seven children aged over four years.
“It has been a very tough decision but we have to focus our services now on babies up to the age of four, and stick to it. ”
The charity wrote to the HSE last year asking for a care package for Ms May and her daughter.
Last month it wrote to the HSE disability services manager for their area, saying Ms May had been “really struggling for these past few months and if a package is not put in place Hannah or her mum will be admitted to hospital.”
None of the letters had been replied to.
Following queries yesterday from The Irish Times, however, a spokeswoman for the HSE said last night a pre-discharge meeting was now planned to discuss the May family’s needs.
“I want her at home with me. She’s my darling girl,” said Ms May. She has never asked for anything. All she wants is to be loved and looked after, and all I want is to be able to.”
