Noah’s story

10-year-old Noah has relied on the services at the Royal Alex from a young age. Here is his story...

Parent Richard Pollins opens up about his 10-year-old son Noah and how he has relied on the services at the Royal Alexandra Children’s Hospital (the Alex) in Brighton soon after he was born. Here is his story…

“There is a degree of irony that my daughter, having been born at the Royal Sussex County Hospital has never had to return to hospital, whilst my son Noah, who was born at home in 2006, has spent plenty of time in hospital.

Noah was born with a small lump on his shoulder blade, which doctors at the Alex diagnosed as cystic hygroma. These are quite rare, occurring only in approximately 1% of children. The doctors weren’t sure what the prognosis was; it could disappear or it could get worse. So naturally we kept an eye on it as Noah grew.

Sadly the lump didn’t disappear – in fact it grew quickly and by the time Noah was one, it was the size of my fist. And on a one year old that’s big. It was obviously a huge worry.

When Noah was 18 months old, we had to rush him to the Alex in the middle of the night after he became poorly. The lump had become infected and the poor lad was in agony. We were told it may be life threatening and you can imagine it was a truly terrifying time for us; we felt completely helpless and the world for us stopped – nothing else mattered.

Noah was in the high dependency ward at the Alex for a week. The support from the hospital and staff was absolutely fantastic. Nothing was too much trouble for them and the facilities the hospital had, such as accommodation for the family, allowed us to stay close to Noah at all times.

It may sound strange, but it felt more normal than the usual hospital experience. The priority was of course to look after the children but we always felt that the staff wanted to look after us as parents too. I remember Noah was in hospital on Mother’s Day and it was a lovely touch for my wife to receive some flowers from the staff that day. There were plenty of tears!

Once the infection was under control, Noah was allowed home. But as the hospital in Brighton didn’t have facilities to carry out MRI scans on young children, Noah was transferred to Great Ormond Street Hospital in London. He was placed under the care of a quite brilliant surgeon Mr Loshan Kangesu.

Following on from a few trips to hospital, Noah was booked in to have the cystic hygroma removed, scheduled for a few months before his second birthday. For those parents who have been through a similar experience I’m sure they will agree that there is nothing worse than seeing your beautiful child completely unresponsive and unconscious under the effects of anaesthetic. It was certainly a nerve wracking few hours while we waited for the operation to be completed. We shouldn’t have worried – when we returned to the recovery ward Noah was up and about within a couple of hours.

Noah has thankfully made a perfect recovery and you really wouldn’t know that he ever went through such an ordeal. He’s now enormously proud of his “shark bite” scar and last year when he was nine, he surprised us all and raised over £1,000 for Rockinghorse (the official fundraising arm of the Alex) by having his long hair cut off.

It might sound silly, but for a while we found it difficult to talk about Noah’s ordeal. I think we have tried to block it from our memory and in preparing this piece, looking at the photos again from that time, my wife and I were quite shocked and emotional.

The whole experience with Noah really opened my eyes to the fact that our hospitals need additional funds to provide the best resources and services of care. The NHS does its best but the hospitals simply cannot rely on government funding to provide the care and facilities for our children’s needs.

What my family and I went through was scary and upsetting, but looking back we were extremely lucky, not just because we had access to some of the best hospital care in the world, but for some parents the outcome is of course so much worse, and they don’t get to bring their children home. That is heartbreaking.“

If you’d like to share your story with us, we’d love to hear from you. Call us on 01273 330044, or email cheryl.piper@rockinghorse.org.uk.