This year Georgia Kirchin asked Santa for a new doctor’s kit, so she can tend to her dolls the way her NHS heroes care for her. But her family are hoping she gets another gift for Christmas – a new heart to save Georgia’s life.
The four-year-old has already had a successful heart valve transplant and lost half her right foot to complications caused by life-saving drugs.
Now her heart is failing and time is running out to find a replacement. Big sister Millie, nine, has even asked a very special person for help.
Mum Jodie says: “The girls were writing their Christmas lists and Millie asked if Santa could bring Georgia a new heart. I had to explain we can’t ask for that, we just have to wait.
“She asked if Georgia will die if she doesn’t get a new heart. My eyes were stinging, I was trying so hard not to cry. I had to say, no, of course not. But the truth is, a new heart is her only hope.
“We don’t know if we have weeks or months to find one. The doctors have exhausted every other option. That is terrifying.”
Jodie, 31, and husband Adam, 30, have watched Georgia deteriorate since last Christmas.
She has to be tube fed, is wheezy, clammy and so tired she only does half days at nursery.
Jodie, from Peterborough, Cambs, says: “She is such a happy, bubbly girl. She just wants to walk with her big sister and copy her gymnastics but she can’t keep up. Georgia takes a few steps then starts crying because she is exhausted.”
Faced with so much uncertainty, the family are busy making special memories. Last week they went to Lapland UK, where the girls made a wooden reindeer with Mrs Claus in her workshop.
Jodie says: “The last piece they had to put in was the heart, to bring it to life. That was emotional.
“We want to make Christmas special for the girls, but it’s hard to think about presents and decorations when all that matters is Georgia’s heart. I am living my worst nightmare. I can’t sleep and I cry all the time. But we have to put on a brave face for the girls, because if you’re scared, they are too.
“We are making the most of every day. We’ve got Georgia a nice new doctor’s kit with an outfit for Christmas. She loves listening to her baby dolls’ poorly hearts and making them better.
“That’s what children should be asking for – toys to play with, not a new heart for their little sister because they don’t want her to die.”
Georgia was taken to hospital with breathing difficulties when she was five days old. Jodie says: “They told us her body was shutting down and they didn’t think she was going to last the night.
“I saw the panic on everyone’s faces as they dashed around trying to save her. I just wanted to cuddle and protect her, but all I could do was watch. I felt sick.”
Doctors decided Georgia needed specialist care, but a transfer team from Addenbrooke’s Hospital in Cambridge refused to take her, fearing she would not survive the journey.
Ward staff rang round searching for a hospital that would. Jodie says: “I was rocking back and forth, thinking, ‘This can’t happen, someone must help her’.”
Glenfield Hospital in Leicester sent a cardiologist and nurse with specialist equipment to transport Georgia. In intensive care, she was diagnosed with a heart valve defect, a hole in her heart, and under-size left pumping chamber.
Jodie says: “When I walked in, I couldn’t recognise her, there were so many wires and tubes.”
Georgia spent six weeks in intensive care, undergoing heart surgery to buy her more time before the drugs being pumped into her bone marrow leaked into her skin, causing chemical burns.
Jodie says: “It went black, like frostbite. They had to amputate half her foot. At one point we thought she was going to lose her leg below the knee.”
Georgia spent Christmas in hospital and as a special treat, Millie got to visit her sister for the first time. In the New Year, Georgia went to Birmingham Children’s Hospital to replace her heart valve with one from a deceased donor. She was finally allowed home when she was five months old.
Jodie and Adam married in 2018 with Georgia and Millie as bridesmaids. Jodie says: “Georgia only started walking the weekend before. She and Millie walked down the aisle holding hands. It was the first time most of our family saw Georgia walk.”
Doctors hoped she would be healthy until she outgrew her donor valve, but Georgia developed cardiomyopathy and almost spent a second Christmas in hospital last year with a virus, only making it home on December 23.
By this summer, doctors decided she needed a transplant and she was added to the waiting list in October. The new opt-out organ donor register – introduced in May thanks to the Mirror’s Law for Life campaign – has increased the number of organs available.
But unlike organs such as kidneys, children cannot have an adult heart donor – the heart has to be the right size, so it has to come from a child.
In the last five years, 39 children died on the waiting list before a suitable heart became available. While 33 children have received heart transplants this year, Georgia is one of 38 who will spend Christmas on the waiting list, hoping for a new life in the new year.
Jodie says: “People ask when she is getting her new heart. They don’t understand the process.
“You can’t just order one. A new heart only becomes available if another child loses their life.
“We would never wish that on a family, but it’s the only hope Georgia has. That’s why we are asking everyone to talk to their family and friends about organ donation and their wishes. Ask yourself, if you or your child needed a transplant to survive, would you accept one?
“Because without donors, there is no hope for children like Georgia, who need the ultimate gift this Christmas.”