AS excited Beatrix Archbold tears the wrapping paper off early Christmas presents in the hospital ward, her parents are filled with joy and dread.
The youngster, nearly two, battles on while waiting for a heart transplant, but both Cheryl and Terry know there’s a chance she may not survive another day.
Little ‘Bea’, from Burnopfield, Co Durham, nearly died after going into cardiac arrest in June, a month after it was discovered that one side of her heart was enlarged.
She was fitted with a Berlin Heart, a device that pumps blood around the body, but it is unknown how long it will keep her alive.
The tot has had multiple scares during her seven-month stint on the wards, so her parents have been treating her to Christmas early in case she doesn’t make it.
The devastating news comes four years after the parents donated the organs of their stillborn daughter, Isabel.
Terry, a police officer, told The Sun: “How long we have with Bea is always at the back of our minds.
“Every day when we see our daughter we don’t know if it will be the last time, so we have to take each day as it comes.
“We didn’t know whether Bea would make it to Christmas so whenever we come up with gift ideas we would buy them and give them to her.
“She’s probably been a bit spoiled but we’re doing everything we can because she can’t leave the hospital unless a successful heart transplant takes place.”
‘Just 50 child donors a year’
The wait for a donor organ has taken an immeasurable toll on the family, with Terry describing it as “a horrendous nightmare”.
It comes four years after the couple’s daughter Isabel was stillborn at 26 weeks, having died of a hypoplastic left heart syndrome, which affects blood flow to the heart but is unrelated to Bea’s condition.
Terry recalls initially being against the idea of donating his child’s organs when first asked by a doctor and believes it was because he had “never contemplated it before”.
“We were asked about donation pretty much straight after Isabel was born. It was hard to think because you’re facing one of the worst experiences in your life,” he said.
“My instinct was to be protective. I didn’t want it to happen. My reaction was negative. I just wanted to be left alone for more time with our daughter.
“But Cheryl wanted to donate her organs and we agreed to do it. We believe we had such different responses because she had read about child donation earlier in life, which planted a seed in her mind.”
Isabel’s heart and tissue were donated after the decision – making her one of a small number of those under 18 whose organs can go on to save lives.
NHS Blood and Transplant told The Sun that there were just 40 young organ donors within the past year. Currently more than 228 kids are waiting for a lifesaving transplant, with 43 needing a new heart.
They said consent rates for adults have continued to rise, but for children, they have remained virtually the same with little improvement for over a decade – at around 50 per year.
Terry said: “There’s no pain like losing a child and you would never want anyone else to experience and understand that loss.
“It’s not about wanting the worst to happen to someone else, but hoping parents would have the courage in their darkest time to say yes and having that uncomfortable conversation ahead of time can help.
“If you have that conversation before, you may make a decision that saves lives, if you’re unlucky enough to find yourself in the horrendous situation of losing a child.
“For us, it’s not just about Bea it’s about every child that is waiting for a transplant and every child that will be waiting in the future.”
‘Lucky’ to catch killer condition
Bea’s heart disease was discovered shortly after returning from a family trip to Walt Disney World Resort, in Florida, back in May.
The family initially her ill health was due to Covid after both mum Cheryl and daughter Eliza, 12, contracted it and they all shared similar symptoms.
But when Bea continued to get worse and stopped drinking, they called 111 for advice and an ambulance was sent.
“The crew came out and they were not overly concerned but told us to go to A&E to get her checked over,” Terry recalled.
“We were lucky – which is weird to say in the spate of awful things – that one of the doctors there had just finished a stint at a children’s cardiac unit.
“Because of that experience, she was able to pick up a heart murmur that others may have missed and were told Bea had cardiomyopathy.”
The family says it’s unclear whether a virus, such as Covid, could cause the heart condition or if it was missed during medical checks.
For the next two days, Bea was treated with various medications to regulate her heart, which was “beating very, very rapidly and unable to function normally”.
The one-year-old had a cannula fitted but kept pulling it out of her wrist and so was taken for surgery to have a Hickman line on her chest instead.
Terry said: “The surgery went well and we were taken to the ICU parents’ room to wait, but suddenly we hear these alarms going off and people running around.
“Bea went into cardiac arrest and they had to perform CPR to keep her alive, shortly after we had a meeting where they suggested surgery to connect a Berlin Heart.
“We were told without intervention there wasn’t much chance of her making it through the night and basically had a couple of minutes to decide.”
Terry says there are risks with the artificial heart – including a 25 per cent increase of a stroke and infections being lethal – but they decided “to do anything to keep her alive”.
Since having it fitted, Bea’s condition has been “relatively stable” but there have been a few terrifying moments, including a concerning blood clot that could have killed her.
“While there were risks I just told the doctor ‘please do whatever you can to save her’ – it’s hard but our daughter is a fighter and has continued to grow,” Terry added.
It’s not known how long the Berlin Heart will prolong Bea’s life – but another child in the UK survived two years until a successful transplant.
Learned to walk in hospital
Reflecting on his daughter’s achievements, Terry described her as “inspirational” having watched her grow up and pass multiple milestones on the hospital ward.
“Bea took her first steps here and on a 6ft gym mat had to walk from me to a nurse on the other side,” he recalled.
“But she kept on going and went even further, I had to play catch up as she was out of the door and all the way up the corridor. It was unbelievable.”
Bea’s bravery has spurred on her parents – along with support from friends and family, many of whom have participated or donated to fundraisers.
Terry praised The Red Sky Foundation, which helps those who need cardiac care and their families by providing funding for grants, hospital equipment and awareness campaigns.
Their support led the dad to write to every MP during Organ Donation Awareness Week to highlight the transplant shortage and call for an NHS review about how doctors talk to parents about organ donation.
Angie Scales, paediatric lead nurse at NHS Blood and Transplant, agrees and explained that not only does the donation “save lives” but it can also “provides comfort to donor families after a tragic loss”.
She told The Sun: “We ask that families talk together about organ donation and their decisions and make sure children are included.
“It is important to register your decision on the NHS Organ Donor Register and be sure your family knows what you want. Children can also register their decision or be registered by their parents.
“Children can save lives too and there are hundreds of children in the UK right now waiting for a transplant that can change their future. Please register your decision and talk as a family.”
Find out more bout becoming an organ donor and register at www.organdonation.nhs.uk.