Heart transplant family angry at ‘bureaucratic wrangling’

The mother of a seven-year-old girl in need of a heart transplant has expressed her anger at “bureaucratic wrangling” over the responsibility for ensuring air ambulance transport to London should a heart become available.

Anne-Marie Lally said she was shocked when she heard through the media that children at Our Lady’s Children Hospital in Crumlin in need of a transplant could not be assured of transport within the four to six hours necessary for the surgery if a heart became available.

Her daughter Pranathi (7) was diagnosed in September with dilated cardiomyopathy and by November it was “clear that she needed a new heart” and she has been in Crumlin hospital since.

She is one of three children in Crumlin currently waiting for a new heart and will have the surgery at Great Ormond Street hospital in London.

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In December, consultants told Ms Lally and her husband Ivor O’Donovan that they were concerned about transport and were putting pressure on the HSE to guarantee it would be available when it was needed.

They were told interim arrangements were in place and they believed these were continuing.

Ms Lally said the first she heard there was no guarantee of transport was on RTÉ.

“I am very shocked. Nobody from the HSE has ever spoken to us and nobody from hospital management has ever spoken to us.”

A hospital spokeswoman said on Sunday night that the site nurse manager meets the family regularly and is part of hospital management. “The nurse manager met the family this evening and addressed concerns arising from the report.”

A HSE spokeswoman said it was their understanding that the families had been kept informed.

“Communications with any family affected are handled through the Children’s Hospital,” she said.

RTÉ radio’s This Week programme gave details of a report in which the hospital’s chief executive told the board on January 25th that the transport services for children needing heart or liver transplants were “unsustainable at this time”.

The Air Corps has responsibility for providing the transport but the report said that the uncertainty was due to staffing difficulties with pilots and air traffic controllers and “will remain unchanged until May 2017 at the earliest”.

The couple were told that the hospital had used private transport “but when I asked if they could guarantee that they had the budget and that the private transport would be available without delay if a heart became available, they didn’t know,” Ms Nally said.

“It seems there is messing between Government departments over who is responsible when there shouldn’t be any delay or doubt that the transport will be in place immediately if a heart is available.”

Ms Lally and her husband are both lecturers at Waterford Institute of Technology but she has been off work and her husband on reduced hours since their daughter, adopted from India 3½ years ago, received the diagnosis.

“She was diagnosed in September. We were in hospital from September 20th to October 20th and came home for five days. They put her on medication but she was readmitted in October and we have been here since.”

Ms Lally said the cardiac centre in Crumlin was super and said she knew her daughter was in good hands there.

But if there was no guarantee of air transport then her daughter should not be in Crumlin hospital but in London, she said.

Minister for Health Simon Harris and Minister of State for Defence Paul Kehoe were understood to be "acutely aware that immediate solutions are required" and are to meet this week.