A Co Down family is spending the month of May taking part in an awareness challenge in memory of their daughter.
Harley Marie McCartan passed away in her parents' arms on Saturday January 30, 2021, after becoming unwell at a couple of months old.
The child, from Downpatrick, was born on July 2020 and was a health and happy baby, bringing much joy to her parents Niamh and Corey and big brother Lucas.
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But when she was due her three month injections, Harley hadn’t been herself and she was rushed to the Royal Victoria Hospital in Belfast.
"Harley flat lined in the resuscitation room, the team was able to bring her back round but found her heart function was severely poor so she needed to be supported with inotropic drugs and a mechanical ventilation," her parents said.
"She had to stay in the paediatric ICU and we found out the left side of Harley’s heart was only working at about 3% and that she was critical.
"Minutes, hours, days and weeks passed and our wee superhero was getting stronger and stronger, to the point where she got moved to Clark Clinic and was almost home. But it wasn’t to be and on the December 3, Harley deteriorated and had to be rushed back to the PICU.
"After a couple of days we were told that they could no longer keep Harley stable and that we need to be transferred to The Freeman in Newcastle Upon Tyne."
Harley underwent a left ventricular device implantation on the December 17, 2020 and was added onto the urgent heart transplant list.
Her surges seemed to be working, and she had progressed towards extubation and self breathing within a week and was converted to a Berlin heart which is another form of heart support.
But the tot started to deteriorate again and needed more support - a CT scan soon revealed she had three bleeds between the lining of the skull and her brain.
She was then removed from the transplant list after suffering a stroke and contracting sepsis and placed onto full life support.
After suffering another seizure a large amount of fluid was detected in the child's brain and on Thursday January 28, her life support was switched off.
"On January 30, our little hero fell asleep in our arms," Niamh said.
"Throughout the worst time of our lives, The Children’s Heart Beat Trust was there to support us with everything. As like last year we do this mile a day in memory Harley and to help raising money for an amazing charity that help so many heart families going through what we went through.
"They make sure no heart families are feeling alone and support tirelessly no matter what."
Please follow this link to donate in memory of little Harley McCartan.
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