Chloe Pescod has two trees to decorate this Christmas. The 20-year-old will also tuck into two turkey dinners and twice as many mince pies.
Because Chloe’s family are making up for lost time – they are celebrating last Christmas, which she spent fighting for her life, alongside the festivities they feared she would never see this year.
Chloe’s organs failed on Christmas Eve, leaving her close to death.
She needed emergency surgery the next morning then spent New Year on life support as doctors searched for a donor heart. They performed an urgent transplant in January.
As if that was not enough, Chloe was diagnosed with cancer in lockdown and spent much of this year battling the disease, but made a remarkable recovery.
“The best gift is being here with my family this Christmas,” says Chloe, from Sunderland. “We’ve been through so much. There were moments I felt like giving up.
“But I have learned how much love and support I have around me. That kept me going. Now I feel like I’ve been reborn. I have my life back and I’m going to make the most of it.”
Chloe was born with Sengers Syndrome, a condition so rare there are fewer than 50 cases worldwide.
Dutch scientists spent 11 years examining her DNA to confirm it.
The condition causes a catalogue of health issues, including heart disease.
Chloe was less than a week old when doctors discovered she also had hypertrophic cardiomyopathy, a thickening of the heart wall which makes it harder to pump blood around the body.
In January last year, a scan revealed her heart was failing and her condition continued to deteriorate until she collapsed on the bathroom floor.
She was moved from a local hospital to the Freeman Hospital in Newcastle on Christmas Eve and diagnosed with multi-organ failure five hours later.
Mum Tracey, 44, says: “At midnight I was taken to a quiet room and told they had to operate. They gave her a 10% chance of survival. It was devastating.”
Chloe had surgery on Christmas morning then was put on life support and dialysis to remove the toxins that flooded her blood as her organs failed.
However, her heart was beyond repair. Her only hope was a transplant heart and it would be hard to find a suitable one due to her other illnesses.
Medics had just four weeks to do the transplant, as that was the longest she could survive on life support.
They had to reject three hearts before finding one that would work.
“Christmas couldn’t have been further from my mind,” Tracey says. “I barely ate for weeks and couldn’t sleep. I was too worried. Then I got a phone call at 5am, asking me to go to hospital. I thought that was it, Chloe was gone.
“When I got there, they told me they had a heart. The relief was overwhelming. There was still no guarantee the transplant would work but it felt a giant leap forwards.”
Chloe spent 12 hours in theatre, but the transplant was a success and she was taken off life support. She remained in an induced coma for another six days.
Tracey said: “Chloe’s chest was still open when they brought her to the ward. They pulled back the sheet and I could see the donor heart – Chloe’s heart – beating. It was incredible. When Chloe woke up, we were in tears. She couldn’t speak, but she squeezed my hand so I knew she could hear me.”
After so long on life support, Chloe spent a month relearning how to breathe, talk, walk and eat before being allowed to return home in late March.
Chloe said: “No-one expected me to walk as soon as I did, but I was determined. My legs felt so heavy, it was like I had steel on my feet, not slippers.”
It seemed Chloe was on the road to recovery. But weeks later she found a lump at the back of her throat and tests revealed she had lymphoma.
The cancer was caused by a rare complication following her transplant, as her immune system had been suppressed to stop it rejecting her new heart, unleashing a dormant virus.
Chloe needed weekly doses of immunotherapy and radiotherapy, which burned her throat so she could not swallow. She recalls: “My mum made me mashed potato and gravy but I couldn’t even eat that. I got upset, it was such a waste.”
The treatment worked and by September there was no sign of the cancer. Chloe still needs regular check-ups before she gets the all-clear, but she wasted no time getting her life back on track.
She enjoys gardening with dad Gary, 50, and sells homemade flowering baskets. She has been horse-riding for the first time in two years and found a job in a tea room.
Chloe says: “Before my transplant, I was sick all the time. I had no energy and could only walk three steps. I feel so much better. I have much more energy and can’t wait to start work.”
Doctors had not expected her to reach her 13th birthday. She has survived 30 operations and spent much of her childhood in hospital.
As well as heart disease, she was born with spina bifida which caused spinal fluid to leak into a sack of skin on her neck when she cried and needed corrective surgery at six months old.
She also had surgery to remove cataracts from her eyes when she was just four days old and had to wear contact lenses as a baby
She suffered ovarian failure and needed growth hormone injections every day until she was 18.
Doctors doubted Chloe would ever walk, talk, read or write, but she proved them wrong.
Tracey said: “We never knew when we would lose Chloe. That worry was always at the back of my mind, especially once she reached her 12th birthday. Despite everything, she never complained. She said as long she had us, she would deal with it.
“It finally feels like we’ve turned a corner and can look to the future. We will never forget Chloe’s donor or their family. Thanks to them, Chloe is here with us this Christmas, but we know they will be missing their loved one.
“I want them to know they have given us the most wonderful present we could have asked for and we will always be grateful.”
The British Heart Foundation funded research that helped pave the way for successful heart transplants in the UK and is now developing cell therapy to prevent transplant rejection.
But the Covid-19 pandemic means its investment in research will fall by £50million. This Christmas, it needs your help to assure the future of its life-saving research. Visit www.bhf.org.uk.