THE parents of a Co Down infant who died in hospital in England have vowed to fight for better paediatric services in Northern Ireland in her memory.
Harley McCartan, from Downpatrick, died at the Freeman Hospital in Newcastle-Upon-Tyne on Saturday.
The six-month-old was transferred to England for specialist treatment in December as facilities to meet her complex medical needs were not available in the north.
Her parents said that, while she may not have survived, it would have been comforting to have family nearby and would have given them a chance to say goodbye.
Heartbroken Niamh McKee and Corey McCartan remained in England yesterday waiting for the results a post mortem which they hope will shed some light on their little girl's complex condition.
Born on July 22, Ms McKee raised concerns about her daughter when she took her to the doctor for her three-month vaccinations.
She told how her daughter had been unsettled in previous days and raised concerns about her colour.
On seeing the infant, doctors arranged for her to be taken to hospital amid fears she had sepsis.
When she arrived at the Royal Victoria Hospital Harley was found to be "floppy" and "lifeless".
Tests later revealed the left side of her heart was "abnormal" and was only functioning at six per cent.
She was rushed to Paediatric Intensive Care Unit (PICU) where she was treated with heart medication and antibiotics.
Seven weeks later Harley was breathing on her own and released on to a ward however within days she suffered a cardiac arrest and readmitted to intensive care.
She later suffered another cardiac arrest and when her condition worsened, it was decided she would need mechanical assistance to help her heart continue to function.
These included a Ventricular Assistant Device (VAD) and a Berlin Heart, which takes over the function of a child’s own heart and, as not available in Northern Ireland, the family had to travel to England in December.
The infant was also added to the heart transplant list.
In the days that followed, Harley's condition worsened. A CT scan revealed she had three bleeds between the lining of the skull and her brain. Some brain damage was also detected.
As Harley was diagnosed as having suffered a stroke and also having contracted severe sepsis, it meant she had to be removed from the transplant list.
With the child now on full life support she was taken for surgery during which two pumps were fitted to her heart.
However, last week after suffering another seizure, a CT scan revealed an increasingly large amount of fluid accumulated on her brain which meant she would be unlikely to survive.
The following day, on Thursday January 28, the medical team took the painful decision to withdraw life support.
Harley passed away at 7.15am on Saturday, January 30 in her parents' arms.
Her heartbroken mother told how she and Harley's father spent their final hours talking to and holding their daughter's hand.
"We just reassured her and told her it was OK and mummy and daddy would be OK," she said.
The couple were still in England yesterday waiting for a post-mortem to be carried out on their daughter.
Ms McKee (25) said she feels "like a piece of me has gone with her".
"It is devastating," she said.
Mr McCartan (24) an aerospace engineer, said he had made his daughter a promise to fight for better paediatric services in Northern Ireland in her memory.
He said having to travel to England for treatment meant the couple had no support network.
"We are completely alone in this and obviously, having to come here and leave our families.
"Harley has passed away so we are dealing with it entirely on our own. Just arranging to get her home is heartbreaking. Everything about it."
The couple praised the Freeman Hospital and its "amazing" staff but said they believed they should have been able "to stay home" and get treatment for their little girl.
"The outcome might not have been any different but we would have been 45 minutes away from family.
"They could have seen her and said goodbye or we could have brought her home to die," Mr McCartan said.
"We plan on contacting as many local MPs to get behind us and make our voices heard that Ireland needs access to these types of resources so no other family has to go through what we have."
The Belfast trust said: "This procedure is only carried out by a small number of specialist centres which would experience a much higher number of patients who originate from all parts of the UK.
"Royal Belfast Hospital for Sick Children does not experience the same volume of patients and would refer such cases to these centres, whose staff have the necessary equipment and specialist training to treat them," he said.
