August 8th 2024.
At Great Ormond Street Hospital, a tiny 11-week-old baby named William Jones is fighting for his life. He is in desperate need of a heart transplant and his parents are urging more families to consider organ donation. William is the youngest child in the UK on the urgent waiting list and is currently on life support, with his only hope being a family agreeing to donate their child's organs.
His mother, Laura Osborne, shared, "I've been a registered organ donor for a long time, but it never crossed my mind to think about children donating until now. Now we are relying on another family to make the selfless decision to donate their child's organs. William's future depends on it."
William has been diagnosed with a condition called dilated cardiomyopathy, which affects the heart's ability to pump blood due to the walls of the heart chambers stretching and thinning. He was able to go home with his parents at 10 days old after being delivered by emergency Caesarean in May. However, at three weeks old, he was taken back to the hospital as he was very sleepy and struggled to feed. That's when he was diagnosed with his condition.
Laura and her partner, Stuart Jones, are currently living in hospital accommodation to be close to their baby. She shared, "We miss him so much, but we're trying to stay strong for him. Our emotions are all over the place, from hope to hopelessness. We try to have a routine and cherish the moments when he is awake and playful. It breaks my heart that I can't hold him much, but we're doing the best we can to give him a good life."
Stuart and Laura with their baby William
The couple is facing a difficult reality and Laura admits that they are terrified as William's condition can deteriorate at any moment. She said, "We don't know if our baby will survive this or not, but we can see the fight in him. He still gives us smiles and when he is awake, he is playful, showing us that he wants to survive."
The family is hoping for a heart transplant, which they believe is William's only option. However, there is no telling how long they may have to wait for a suitable donor. Laura shared, "We could be waiting for a year, two, or even longer. There's also a possibility that William may not make it to the transplant, but we are not giving up. He needs this transplant to survive."
Lead nurse for paediatric organ donation at NHS Blood and Transplant, Angie Scales, emphasizes the importance of organ donation for children like William. She said, "For William and many other children waiting for a life-saving transplant, their only hope is another family agreeing to organ donation during a time of immense sadness and personal grief. Losing a child is a tragedy, but knowing that their donation has saved lives can bring some comfort to the families of young organ donors."
She urges parents to have open conversations about organ donation and to consider registering themselves and their families as donors. She said, "Your decision could potentially save lives."
Currently, there are over 7,000 people waiting for an organ transplant in the UK, including 250 children. Out of those, almost 300 are in need of a heart transplant, with 38 of them being children. William is one of them, and his parents are hoping that their story will encourage more families to consider organ donation and potentially save their son's life.
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