Poppy Lambert was diagnosed before her birth with a rare congenital heart defect Tetralogy of Fallot (TOF), a serious heart condition requiring major surgery. She is now waiting for a heart donorMax Johnson speaks to The Mirror on the fifth anniversary of Max and Keira’s Law being passed
The worried parents of a little girl with a serious heart condition are urging families to consider the ‘ gift of life ‘ through organ donation. Poppy Lambert was diagnosed before her birth with a rare congenital heart defect Tetralogy of Fallot (TOF). The tot had major heart surgery at the Freeman Hospital in Newcastle in December.
Her condition worsened and she underwent several more surgeries before doctors discovered her damaged tricuspid valve. Her condition has deteriorated so much that a heart transplant is her only option.
Poppy Lambert with parents Becca and Kevin and consultant Barbara Cardosa(Image: North News & Pictures Ltd)
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Parents Becca and Kevin Lambert, from Cleator Moor in Cumbria, have asked people to talk to their families about organ donation, as it could give a child a “chance of life”. Becca said the current expected wait for a transplant was about two years and the heart would need to come from a child of a similar size to Poppy, who is 21 months old.
Becca, a donor carer with the NHS, told the Mirror: “I work in the Cumbria team collecting blood donations for the NHS transplant service. “We are making a public appeal because organ donation is at an all time low. This is not just for Poppy, for everyone on the transplant list. She is being kept alive by life support so a heart transplant is now her only option. “She has a Berlin heart (a mechanical device that pumps blood) and once she is better, she will be able to move around with it. But she had a stroke and lost muscle mass from being in bed for so long.” She added: “We know that it is such a hard decision to make when a child unexpectedly passes away. It is such a difficult thing after such an awful loss, so we respect anyone’s decision in that situation. “We first came to the Freeman on December 15 and only expected to be here for a couple of weeks. But Poppy’s condition was worse than we thought.”
Poppy needs an organ donation(Image: North News & Pictures Ltd)
Poppy has been in the hospital, where Mirror campaigner Max Johnson received his transplant, ever since. The problem with Poppy’s heart emerged at her 22-week scan. The condition was confirmed when she was born with a narrow pulmonary valve and muscle growth in the left ventricle chamber. Her condition has deteriorated since then. Becca and Kevin were aware of the Mirror-backed Max and Keira’s Law through stories covering the new legislation in England which came into force in 2020. She said: “I do support it and have a petition. I would like that when you sign up for organ donation, that it cannot be changed by next of kin. It is one of the biggest reasons it does not happen in adults. “I would like to see that reviewed so that once you make that decision, it cannot be changed and it does count.” Poppy’s treatment has involved her being supported by an extracorporeal membrane oxygenation (ECMO) machine, which acted as an artificial heart and lungs. She has undergone dialysis following temporary kidney failure and was fitted with a Berlin Heart to mechanically pump blood around her body. “It has been a rollercoaster of emotions for us, especially when we thought Poppy was getting better,” said Kevin, 33, who is a manager at the Sellafield plant in Cumbria. Barbara Cardoso, paediatric cardiology consultant and transplant physician at Newcastle Hospitals, said some families who lost their children found comfort in choosing to donate organs. No matter what their decision, they would be supported by medical staff.
“Nothing can take away the unimaginable pain of the loss of a child,” she said. “But some families find comfort in knowing that, if they choose organ donation, their child’s heart can help another child live – a legacy of love that continues.”
Our campaign to bring ‘opt out’ to England was successful thanks to the families of Max Johnson, of Winsford, Cheshire, and Keira Ball.
Max was just nine years old when he received the heart of Keira, who was also nine when she tragically lost her life in a car accident near her home in Barnstaple, Devon.
Despite his tender years, Max asked that she be included in the name for the new legislation. It was named Max and Keira’s Law in their honour following a five-year Mirror campaign.
Opt out means people no longer have to carry an organ donor card. All adults in England are considered as having agreed to donate their own organs when they die unless they opt out.
The families of donors are consulted before the donation is made.