Carys’ story

The Verdin family’s relationship with the Noah’s Ark Children’s Hospital for Wales started one morning back in 2007, when Carys went to pick five-month-old Rhydian from his cot and noticed that something was wrong. Rhydian’s mouth and left eye had suddenly developed a droop and he was limp down his left side.  While waiting to see a doctor his condition got worse and the decision was made to refer Rhydian straight to the recently opened Noah’s Ark Children’s Hospital for Wales for further investigation.

Carys says: “I obviously knew that something wasn’t right but I hadn’t expected anything really bad. He was admitted to Ocean ward and underwent tests which all came back negative so when he went down for what I expected to be a precautionary MRI scan the following morning, I was busily packing our things to go home. But that all changed very quickly when the results came back.  We were taken in to a little room where a team of nine clinicians showed us images of Rhydian’s brain on a screen.  The scan had revealed a massive tumour and we were told that they were desperately trying to find someone to operate as soon as possible.”

Four days later, at 8:30am, Rhydian and was taken to theatre for his operation.  Carys waited by his bedside for news all day and at around 9:30pm she was taken to the intensive care unit within the main hospital to wait because at that point, the children’s hospital didn’t have an intensive care unit of its own.  Carys describes sharing a waiting room with families from the adult intensive care unit as harrowing and completely different to the atmosphere she’d experienced at the children’s hospital.

At 1:40am the following morning, more than 17 hours since they had said goodbye, Carys and Les were reunited with Rhydian, though now unconscious and covered in tubes. The surgeon had successfully removed 95% of the growth and when a few weeks later the biopsy came back as a benign low grade non-aggressive tumour, the family were hopeful that they’d got through the worst.

Rhydian returned home a month later and life for the family reverted to some semblance of normality, though now with a big box of medication and regular visits to the local hospital.   However, following another MRI scan later that spring, Carys and Les were given news that no-one had expected. In only a few short months, the tumour had grown back to its original size. Rhydian underwent another operation to remove most of the tumour but this time, it left him clinically blind. As radiotherapy isn’t usually given to children under seven, Rhydian’s only remaining treatment option was a third and final surgery if the tumour was to return.

Carys says: “At that point I think we all understood that Rhydian’s condition was most probably terminal.  His doctors had never seen a tumour of that size in a baby that young and it wasn’t behaving in the way they were expecting it to so his prognosis was just one big unknown.  We were told though that for every five years Rhydian was alive, technology would move on so we decided to focus on that while enjoying the time we had.”

Rhydian’s recovery from his second operation took place on one of the old children’s wards.  Unlike their four bedded room on Ocean ward, South ward had 48 beds, one toilet and no natural light.  Carys spent a month sleeping next to Rhydian on a chair and says the experience was both mentally and physically draining.

As if Rhydian’s illness wasn’t hard enough to deal with, it was around this time that Carys’ two-year-old daughter, Catrin, was diagnosed with Multiple Scoliosis and only a week after returning home with Rhydian, Carys was back on South ward with Catrin.  As the result of a post-operative infection, Catrin spent almost seven weeks on the unit during which time, Rhydian was also admitted with an infection.  Carys found herself in the extraordinary position of having two children in hospital at the same time for very different reasons and says had the staff not been kind enough to find all three of them a room together, she’s unsure how she would have coped.

After a scan the following January, Catrin and Les were given the mixed news that although Rhydian’s tumour was growing back, this time it was at a much slower rate. As a result he didn’t undergo his third, and what should have been final, surgery until the September. As before however, the operation took its toll on little Rhydian.  He developed post-operative meningitis and though he gradually recovered, he now needed long term IV care and feeding via a nasal gastric tube.

Once back at home again, Carys was determined to give her son as normal a life as possible and she enlisted him in the local nursery school.  Despite all his troubles Rhydian was a happy and determined little boy, overcoming his mobility issues by rolling around on the floor and learning key words and phrases to communicate his needs. Life for the family was tempered with visits to the Noah’s Ark Children’s Hospital for both Rhydian and Catrin but during this time, Rhydian’s tumour was growing at a far slower rate than before

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It was September 2010, before Rhydian’s medical team decided that that the tumour had grown too big again and that they would operate for a fourth and final time to remove as much of it as possible.  The following January, with no other options open to them, the family fought for Rhydian to receive radiotherapy.  Though that four months of treatment was extremely tough, Carys is certain that it gave the family extra time with their little boy.

Carys says: “That four years we had with Rhydian after his radiotherapy were happy ones. He loved school and singing and playing with his friends and took very well to being centre of attention.  Noah’s Ark was still our home away from home though and we spent another extended period there with Catrin in 2012 after she developed an infection in her bones and needed the metal work in her back removed.  We saw the hospital as it developed all the way through it second phase.  We even met charity patron, Catherine Zeta-Jones there on her visit in 2010 so we really felt like part of its story.”

In September 2015, shortly after starting in year five at school, Rhydian suddenly became ill and was admitted to the Noah’s Ark Children’s Hospital for Wales for the final time.  He was rushed straight to theatre where a secondary tumour was found on his spinal cord. In a bid to give Rhydian some more precious time, surgeons tried to remove the tumour again but due to its position, were only successful in removing half. After a period on the new paediatric intensive care unit, doctors told Carys and Les that there was nothing more that could do for Rhydian.  The family took their son home and a few weeks later, on the 17^th of October, 2015, Rhydian died.

Carys says: “As a parent you can never ever get over the loss of something as precious as a child but the experience has taught me that life is both fragile and precious and if nothing else I need to move forward for the benefit of my other children.”

“Catrin and I are still both regular visitors to the Noah’s Ark Children’s Hospital because she has to have extensions on the rods in her back every six months.  We were in for much longer recently after she developed a post-operative infection and although it’s hard for us both to be somewhere we associate with Rhydian’s last few weeks, the staff are so kind and caring that it helps take our mind off things.

“I remember when we first came with Rhydian, you had to travel a long distance through the adult part of the hospital to get to surgery or radiology and everyone would turn and look.  But now, everything’s under one roof and specifically designed for young patients in mind.”

“The play specialists do everything they can to keep Catrin entertained and the environment is so much lighter and airier than it was when we came here before the children’s hospital was built.  I know they might seem like small things but when you’re here as often as we are, they make such a difference.”