Kidney problems: a parent's perspective

Ellis was transferred to Great Ormond Street Hospital (GOSH) shortly after birth, when doctors at his local hospital noticed his kidneys weren’t functioning. Here, his dad, Trevor describes how he and his family have coped with Ellis’ kidney problems.

"We already had two daughters, but Ellis was our first boy. As a dad, and the only man in the house, I was really looking forward to his arrival.

"He was born by emergency caesarean at St John’s Hospital, Chelmsford, and when he came out, he wasn’t weeing or anything. I thought, 'is that major, or is it something they can sort out while we’re here?' It’s only when they said he was being transferred to GOSH that the alarm bells rang.

"I knew nothing about GOSH. Unless you’ve got a seriously ill child, or you know someone who has a seriously ill child, it’s just not part of your life. It’s not until you actually go there that you realise the severity of the illnesses some of these kids have got. It’s not your normal hospital.

"The doctors said Ellis’ problem was something they’d seen before. His kidneys weren’t functioning. Usually, with a bit of medication they would kick in and it would be fine. When I heard that, I wasn’t really too bothered. I thought, 'they know what they’re doing'.

Starting dialysis

"They’d been giving Ellis medication and monitoring him when they realised he had a blood clot which was stopping his kidneys from functioning. It was centimetres from his heart and was very dangerous, but they liked to think it would move and the kidneys would kick in. It never did. So then we knew he was to go on dialysis.

"We were worried because it is very rare for a child to be on dialysis from birth. He was being fed through a tube, was on medication to keep him alive, and we were given the option to stop all the medication and let him pass away. We’ve been told the same thing on numerous occasions over the years, but that wasn’t an option as far as I was concerned.

"Ellis was on home dialysis for two years. That was the worst experience of my entire life. There were all kinds of things that were wrong with him. And in those early years, I think our daughters suffered because Ellis’ care took up all of our time. He was growing up, he was on dialysis, had a wheelchair because he couldn’t walk, and he wasn’t eating. But I think it made me and my wife stronger. She was off work for 10 years coping with him and hospital trips. Those early years were awful.

Waiting for transplant

Photo of Ellis
Ellis has met all the Arsenal players, interviewed Arsene Wenger and won Junior Gunner of the Year

"The next thing was to go on the transplant list and just wait. But in between, Ellis had a cardiac arrest. He was poorly in hospital, which happened a lot, and we got a call asking if we were coming up to the hospital.

"When I asked why, I was alarmed to hear he’d been rushed to intensive care and a police car was being sent to pick us up. In the car I was thinking, 'oh my God, I’ve got to bury my son.' We got there and he was so poorly. But it was just one of many episodes over the years.

"When we finally got a transplant match, I jumped for joy. It’s a massive operation, but it had to be better than dialysis. With all the problems he has, it wasn’t straightforward, and initially I thought he wouldn’t make it. But, of course, he did.

Football mad

"He’s 10 now and all he’s interested in is football. He’s football mad and a disabled member at Arsenal. He’s met all the players, interviewed Arsène Wenger and we go to every home game. Everyone knows him. One year, he won Junior Gunner of the Year. He just battles. He’s sight-impaired and has had plates in his knees, but he’s participated in the British Transplant Games three times.

"The worst thing is knowing you’re not supposed to bury your kids, but at some point I know that may happen. We were always told he could only ever have one transplant, but we don’t know. I don’t look past today, he’s great today but tomorrow he could be awful. I try not to look too far into the future.

"But it’s not all doom and gloom. We’ve had great times – Lapland, Disneyland Paris, things like that. You’ve just got to give your child that chance. I wouldn’t change a thing. I would love him to be completely healthy, but he’s not going to be, and if he was a healthy child, he wouldn’t be that same person we love."

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