A HSE promise to provide four extra intensive care beds at Our Lady's Hospital for Sick Children in 18 months was a "cruel taunt" to the families of more than 150 children whose operations are being routinely cancelled, the mother of a two-year-old girl awaiting heart surgery has said.
Gemma Lawlor, mother of Joy Lawlor-Doyle (2), said her daughter's condition was worsening and she could "enter heart failure" at any point.
Joy, who was adopted by Ms Lawlor and her husband, Mark Doyle, from Vietnam when she was six months old, has a hole in her heart, pulmonary stenosis - where the pulmonary valve in the heart is not working to efficiently allow blood flow to the lungs, and her heart is enlarged.
Though she was born with the problems her adoptive parents did not know about them until they had her examined.
She initially had key-hole surgery at Our Lady's Hospital for Sick Children in Crumlin but it was unsuccessful.
In January her parents were told Joy would need open-heart surgery. She is one of more than 150 children on the waiting list for cardiac surgery at the hospital.
Though the surgeons are available they can only perform surgery two days a week, and figures released by the hospital last week showed two heart operations per week were cancelled there since January.
Speaking from the family home in Carlow yesterday Ms Lawlor told how Joy's surgery had been scheduled for Tuesday, September 1st last, but was cancelled.
The couple were not given a reason, but figures indicate the main reason for the cancellation of heart surgeries every week at Our Lady's has been a lack of intensive care beds.
The most apparent symptom Joy displays is that "she loses energy very quickly".
"She goes blue in her lips and it's like her system is shutting down. The blood isn't circulating properly. It's just serving the vital organs. It is absolutely terrifying.
"She doesn't really complain. She goes very quiet when she gets weak. One of the first things she learnt to say was, 'Mummy I'm very tired'.
"It is very distressing, because she really is the best little chicken in the world. All we can do is comfort her and mind her but it is so frustrating when this is so solvable if people in power would just prioritise it."
It was when staff at Joy's creche contacted Ms Lawlor last week to say they were so concerned about the toddler they felt they could not take responsibility for her care any longer that she wrote to Minister for Health Mary Harney.
"I do not want to demand my child receive her crucial surgery before any other child in dire need. There are hundreds of families on alert, waiting, hoping, praying and crying for the chance to live," she wrote.
"I am begging you to recognise and rectify this ridiculous situation the Government has put us in."
The economics did not add up, she wrote. There was a large team of highly qualified professionals unable to work on a weekly basis.
"The promise of having an appropriate ICU unit in OLHSC in 18 months is a cruel taunt. What use will that be to us now?"
The couple have begun the Save Joy campaign, for all children awaiting cardiac surgery.
"We want Joy in our lives," said Ms Lawlor. She appealed to people to go to www.savejoy.org and to download and display the poster photograph of Joy.
The HSE said it was working with the hospital to increase ICU capacity by 2011.
