The family of a little boy at the centre of a transplant campaign have sent a message of hope to the parents of a County Durham toddler waiting for a new heart.
Beatrix Archbold underwent surgery to attach her to a Berlin Heart Ventricular Assist Device, which does the work of her own failing heart. She suffered heart failure last month, followed by a cardiac arrest, and is waiting at the Freeman Hospital in Newcastle for a donor organ which will save her life.
Her parents Terry and Claire Archbold, from Burnopfield, made the agonising decision four years ago to donate the heart of their stillborn daughter Isabel for medical research. Now they are on the other side of the organ donation story as they wait for a heart donor for 16-month-old Beatrix.
Read more: Gateshead dad's epic Hadrian's Wall run in honour of baby son who died at six weeks
The youngster is in the same hospital where Max Johnson, 14, from Winsford, Cheshire, received his heart in 2017. His life was saved by the selfless sacrifice of the family of Keira Bell, who died aged nine following a car accident near her home in Barnstaple, Devon.
The two families joined forces in the Mirror's four-year campaign to change the organ donor law in England. It resulted in Max and Keira’s Law, named in their honour, being introduced two years ago. The law means everyone is presumed to be a donor when they die unless they opt out, though a final decision is always verified with loved ones.
Max's dad Paul Johnson, who works as a civil servant, has paid tribute to the Archbolds in the national newspaper.
The 49-year-old said: "They are a remarkable family who helped others and are now desperate for an organ to save their little girl. We hope and pray they receive the girl of life very, very soon. Beatrix could not be in a better place for a transplant. The Freeman is the best in the country if not the world. Their surgeons push the boundaries of clinical possibility to save lives."
Terry, 44, and his wife Cheryl, 40, both local authority workers, have thanked the Johnsons for their kind words.
Terry said: "It is really reassuring to hear from families who have walked the same path before us. It does give you hope. We know that there are children who have waited years for a transplant. There are absolutely incredible stories and we are taking inspiration from them."
Beatrix’s sister Isabel had hypoplastic left heart syndrome. Her heart was donated for medical research into the condition after her stillbirth. Beatrix was diagnosed with a completely different condition, an enlarged heart, in May.
Terry said: "The particularly difficult thing is when you talk about donating to children. We lost Isabel in 2018. We did agree to donate her heart to research, she had very complex and rare issues. The doctor came into the room as I was holding her to ask about donation, I know how difficult that decision was. Now Beatrix is waiting to be a recipient, so we have seen both sides.”
The family had just returned from a trip to Disney World in Florida when Cheryl and her daughter Eliza, 11, tested positive for coronavirus. When Beatrix lost her appetite and became lethargic they thought she must have Covid-19 too.
But when a rash appeared on the back of her neck, she was taken to the Queen Elizabeth Hospital in Gateshead, where doctors detected a heart murmur and chest X-rays revealed that one side of her heart was enlarged.
On May 11, she suffered heart failure and was transferred to the Freeman Hospital where she went into cardiac arrest as she had a line inserted to receive medication. Terry said: "They had to fight to bring her back." She then had surgery to attach her to a Berlin Heart Ventricular Assist Device to do the work of her own failing heart.
Terry said: "She was fit and healthy for the first 15 months of her life, then this happened. It was so unexpected. There was no genetic link with her sister’s condition, it was just bad luck. As a parent, nobody contemplates something terrible happening, and the prospect of losing a child."
Cheryl, 40, added: "We hope that donating Isabel’s heart will help another child. If they can find the cause of the condition, they may be able to find a cure. It could help other parents with earlier screening in pregnancy. We try to get a little smile from Beatrix, make sure she is happy and comfortable – and raise awareness of organ donation."
Read more:
