Henry Entwistle, Age 6, Mansfield, Nottingham Children's Kidney Transplant
Henry received a kidney donation from his grandad (live donor).
Henry’s parents Rebecca and Benjamin found out in utero that he was going to need a kidney transplant as soon as he reached 10kg. At 28 weeks, it was discovered he had posterior urethral valves, meaning that his urethra had a blockage in it near the bladder and it was difficult for him to pass urine. This caused his kidneys and bladder to swell, damaging his kidneys. At 31 weeks, Henry’s parents were asked if they would like to terminate the pregnancy.
When they found out about Henry’s kidney damage in utero, Henry’s dad Benjamin and grandad David (paternal side) both went for scans and were both a match. They decided that his grandad would donate his kidney, hoping that his dad could donate his kidney later in Henry’s life, when he needs another transplant.
At birth, Henry was given a 70% survival rate – his kidney function was just 6%. When he was just two days old, he was fitted with a dialysis catheter, but it was removed at three weeks having never been used as Henry managed on just medication pre transplant.
Henry had a kidney transplant from his grandad at 18 months old. However, he experienced lots of problems during the transplant, including a perforated bowel, and had to have his native kidneys removed to make way for the new one. He was left open and in a coma for 16 days after the transplant due to swelling and spent 3 weeks in the PICU.
Henry was moved back onto his ward but wasn’t moving at first. The doctors originally thought he was experiencing withdrawal from the drugs he was given while in a coma, but after seeing neurology, it was found that he’d had a stroke while he was in the PICU. He was in inpatient for 11 weeks. After his stroke, Henry was paralysed and his parents were told he may never walk, talk or see again. Just before he was due to leave, he went into antirejection as he was receiving donor blood (had no antibodies for 3 months). It took him around 8 to 10 months to walk afterwards.
Today, Henry is a typical, vibrant six-year-old, who is living with a gastrotomy tube. He took part in the British Transplant Games for the first time in 2023, where he was one of the youngest competitors. At the 2024 Games, he competed in the donor run, obstacle race, cup stacking and ball throw.
His parents are passionate about spreading the message that everyone should be an organ donor, and tackling the misconception that it’s just the elderly that need transplants.
Comments