A family has told of the heartbreaking final moments they spent with their daughter before her organs were donated – and saved the lives of five other children.
Ten-year-old Ella Thatcher’s sudden death from an epileptic seizure mean her heart, lungs, liver and pancreas and two kidneys saved others from a similar fate.
It comes as an historic organ donation bill should become law today with the granting of Royal assent to herald the start of a cultural shift towards life saving transplants.
Presumed consent will come in to force next year meaning organs will be donated unless a patient had opted out. But crucially, bereaved family will still be able to veto transplants.
Ella suffered from a severe form of epilepsy called Dravet Syndrome but the family thought she had it under control after her seizures reduced from 55 a month to one every six months.
That was before she suffered a devastating attack at their home at Hurstpierpoint, near Brighton, one morning last year.
She stopped breathing and paramedics revived her before she was transferred by ambulance to the specialist Evelina London Children’s Hospital.
Mum Anna thatcher told the Mirror: “Ella had gone for a scan and when I got there late at night the doctors said ‘it’s a bit noisy in here let’s go to another room’. We thought that didn’t sound good.
“He told us Ella had swelling on the brain and was ‘essentially brain dead’.
“We knew she wasn’t well but we hadn’t expected that. We were just stunned.”
The family were allowed to sleep in the room with Ella that night. The next morning Anne and dad Mike broke the news to her siblings Oliver, 13, and Mia, 8. Each of them spent some time alone with Ella and they said their goodbyes.
“She then had to be declared brain dead by two doctors, that was the hardest part,” Anna said.
“We asked to be in the room when they have to turn the oxygen off to check she cannot breath for herself. We were holding her hand willing her to blink or something, but there was nothing.
“Organ donation was the first thing we thought of when we found out there was nothing we could do.
“Before they took her away I was able to lie next to her. The nurse was amazing and agreed to hold her hand throughout the surgery. When she came back she had a lovely blanket over her up to her shoulders.
“You don’t see the scars where she has been neatly sewn together. She just looked asleep and peaceful. It was all done with so much respect.
“Then we left the hospital to plan the funeral.”
The Organ Donation Bill should receive Royal assent today meaning it becomes what has been named Max and Keira’s Law.
Prime Minister Theresa May agreed to name the law after campaigning 11-year-old Max Johnson and his nine-year-old heart donor Keira Ball.
It comes after a three year campaign by the Daily Mirror and is expected to save hundred of lives every year
A multimillion pound awareness campaign will now encourage families to discuss their wishes should the worst happen.
Anna, a principal at a language school, added: “We realised she was gone and we didn’t want anyone else to feel like we did.
“Because of Ella five families don’t have to plan funerals, think about grave stones and sit on the sofa in the morning waiting for their child to come downstairs.
“We always knew there was a higher chance of infant mortality with Dravet, as it’s about one in 25, but this normally happens in children who have not got their seizures under control.
“To us having her seizures under control like that was fantastic.
“Ella had severe special needs and the mental age of an 18-year-old but she was happy. She was friendly and very affectionate and would lead you by the hand to walk to places. Other people’s lives return to normal but ours don’t, we still miss her just as intensely.
“I would say to any other parents in that same situation we were; your loved one isn’t there anymore but if you can stop someone else feeling how you are now then just do it.
“It will never bring them back but to know they have saved other lives is a tremendous comfort.
“We deal and live with our loss every day but as time goes by, the thought of others walking around with a part of Ella is a huge reminder that she is not forgotten by others.”
Samuel Newman, specialist nurse for organ donation at Guy’s and St Thomas’ Hospital, said: “There are more than 50,000 people alive today thanks to an organ transplant.
“This would not have been possible without the generosity and selflessness of thousands of organ donors like Ella, and the bravery of their families.
“Around 6,000 people are in need of an organ transplant in the UK so it remains as crucial as ever for people to join the NHS Organ Donor Register.”
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