Daily Mirror (Northern Ireland)
The brave little girl who spends her Christmas giving presents to sick children
the Freeman Hospital mas Eve 2014, when s 10 months. She also buffet for the parents. -at-home mum says: year I bought all the f. A lot of the families emotional. For some was the first time they Santa, because it was for them to go out. year we personalised with ‘heart hero’ sewn oft toys and blankets.” y now raises £1,500 a ar to buy the presents. She also founded the support page Heart Family Group on Facebook, which has more than 3,000 members and 11,000 followers, and organises an annual trip to Alton Towers.
She was even asked to be godmother to another little heart hero. “It’s amazing being part of this massive family, helping others at a time that’s so precious.”
Fay and husband Michael, 31, were told Chanel had hypoplastic left heart syndrome 20 weeks into the pregnancy. It meant the left ventricle in Chanel’s heart was severely underdeveloped.
She would need several openheart ops to “re-plumb” her circulation so she could survive using just the right side. Complications meant Chanel’s chances were 5% and they were offered a termination, which Fay refused. Chanel arrived by caesarean in a cardiac operating theatre at the Freeman Hospital so that surgeons could get to work immediately.
Fay says: “The surgeon stood next to us and grabbed Chanel straight away, then opened her chest in the corner of the room.
“I told him, ‘If there’s nothing you can do cover her chest and bring her so I can hold her, otherwise I’ll never get to touch her’.”
Fay waited four agonising hours. “Afterwards, they pushed her past me so I could see her,” she says.
For the next three months, Fay and heavy goods driver Michael took turns to sit by her side while the other went home to care for their two sons Chase, now seven, and Cole, five. When Chanel was a week old she suffered cardiac arrest in her second open-heart op. She was so heavily sedated they only discovered she had also suffered a stroke when they took her home and noticed she could not move the left side of her body.
Chanel could not walk until she was two-and-a-half and wears a splint on her left leg. She still has to be fed by tube and cannot move her left hand. She had her third openheart op at six months, followed by a fourth this August.
But surgeons spent six months debating whether to do the third op or skip to a heart transplant.
That had its own risks – Chanel would have to go on a waiting list and there is a shortage of organs. Even if she got one in time, her body could reject it.
After the op, Chanel’s kidneys and liver began to fail and she needed dialysis. Yet Fay was determined to continue her Christmas tradition and began buying gifts as soon as her girl came home.
Fay says there is one Christmas present she would like this year in return for all her hard work and generosity. She wants England and Northern Ireland to follow Wales and Scotland by having an opt-out organ donor register. Last week, the Government began a consultation on the change in response to our Change The Law For Life campaign.
But Fay knows every day that passes means more children will die. She says: “Chanel has lost friends who died waiting for a heart transplant. Her heart function is poor, every time we take her to the clinic we are afraid they will tell us she has heart failure and needs a transplant.
“But we have seen the amazing difference a new heart can make.
“We have to hope they bring in the opt-out register quickly. That would be the best Christmas present ever, not just for us but all families in a similar position.”