Parents make appeal for families to discuss organ donor intentions

Toby Nash, 11, with his mother Louise, father Lee and brother Elliott,15. Photo by Kate Shemilt
Toby Nash, 11, with his mother Louise, father Lee and brother Elliott,15. Photo by Kate Shemilt

The parents of an 11-year-old boy with a heart condition have extended their appeal for people to talk about signing up as an organ donor.

An NHS survey, released last week as part of Organ Donor Week, found many organ donations were blocked because families were unaware of what their relative wanted.

The survey found 84 people in West Sussex remain on the transplant list.

One of these is Toby Nash, from Felpham, who was born with hypoplastic left heart syndrome, which means that his left ventricle – the side of the heart which does 80 per cent of the work – did not develop in the womb.

He has spent the past three and half years on the transplant list despite two admissions for a transplant.

His father Lee Nash, of Outerwyke Avenue, Felpham, said: “Toby has had two calls of a prospective heart but each time, after getting to Great Ormond Street Hospital and being admitted on the ward, we were informed that after some further tests that the organs were not suitable.

Due to Toby’s condition, he had to have three stages of open heart surgeries before his fifth birthday.

His first operation was when he was five days old, the next when he was just under three months and his third when he was four years old.

Lee added: “Sadly, after his third stage, one of his valves failed and he had it replaced with a mechanical valve.

“Although this valve was supposed to last up to ten years, this valve failed after eight months and, as a result, Toby had to have his valve replaced again, this time by a bovine valve.

“After a time, he seemed to improve and Toby was stable for about nine months then sadly his heart rate started to fall very low, especially at night one evening when we were checking him. Before we went to bed, he stopped breathing.

“We resuscitated him and he was admitted for emergency surgery and had a pacemaker fitted.”

“He was placed back on the transplant list and has also had further heart surgery to replace the failing valve and to extend his life and chance of getting a transplant.”

NHS Blood and Transplant added: “We want everyone to be able to save lives through organ donation and not be prevented from doing so because they have not told a relative their decision.”