Four years ago Terry and Cheryl Archbold made the agonising decision 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 their desperately ill 16-month-old daughter Beatrix.
Beatrix suffered heart failure last month and is now in the Freeman Hospital in Newcastle waiting for a donor organ to be found to give her the life-saving transplant she needs.
Her condition is not related to the hypoplastic left heart syndrome which Isabel had suffered.
Terry, 44, says: “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, from Burnopfield, Co Durham, 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 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 says: “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 says: “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.” In an online post, Terry says: “The sense of grief I feel about Beatrix’s situation feels exactly the same as the grief I felt for Isabel. Without parents choosing to donate in the midst of their own tragedy, none of these children, Beatrix included, have a chance of life.”
Cheryl, 40, says: “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.”
Praising our Change the Law for Life campaign, she says: “The work of the Mirror campaign on that has been awe-inspiring.”
Beatrix is in the same hospital where Max Johnson, 14, received the heart of Keira Ball, nine, who died in a car accident.
Our campaign led to a change in the law to make consent for organ donation presumed.
Follow Beatrix’s journey at facebook.com/BeatrixHeart22 and visit organdonation.nhs.uk
