Caleb's Story

Caleb was just a day old when doctors discovered had had a heart murmur, low oxygen and three holes in his heart. After a few nights in his local hospital in Abergavenny, Wales, Caleb was discharged, and his parents were told everything was fine. Then, at around nine weeks old, he had a cardiac arrest at home.

“It was quite unbelievable that he survived it, because it was so severe,” Caleb’s mum, Jenna, says. “It was after this that we found out he had cardiomyopathy [a disease of the heart muscle].”

In the months following, Caleb was in and out of hospital, including a blue-light trip to Bristol Hospital where he was fitted with an emergency pacemaker. ‘‘Every time Caleb picked up a common cold, it would be really dangerous for him,” Jenna says. “Our visits to hospital became more and more frequent. They went from being every few months to every couple of weeks and we just knew his heart wasn’t going to get better."

In June 2021, two days before his first birthday, Caleb became very poorly and was taken to Cardiff Hospital in an ambulance, where doctors had to ventilate him. It was clear that he would need a heart transplant, so Caleb’s doctors got in touch with Great Ormond Street Hospital (GOSH) for advice.

“We arrived at GOSH in the early hours of the next day and Caleb was taken straight to intensive care as an ECMO [a machine that acts in place of a child’s heart and/or lungs] patient,” Jenna says. “The Monday was Caleb’s first birthday, so it was really hard being in hospital for that, with him being on a ventilator. We had to sing ‘Happy Birthday’ on FaceTime with his older brother and sisters, which was tough.”

The family was told there were two choices: doctors could fit Caleb with a new pacemaker, or he could be put on a Berlin Heart, which is a mechanical device used to support children in severe heart failure, either until recovery or until a heart transplant is possible “We decided to take the chance to put Caleb on the Berlin Heart, so on Wednesday he went into surgery for nine hours, which went well,” Jenna says. “After the surgery, he spent five weeks in intensive care and was on a ventilator for 19 days.”

Caleb was eventually well enough to transfer to Bear Ward, where he spent seven-and-a-half months.

He grew stronger and enjoyed visits from the Play team, which is funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity). “The Play team were amazing with Caleb.” Jenna says. “They did lots of arts and crafts and painting with him, which he loved. We also had music therapy every week, where someone would come in playing guitar and we’d all sing together. It helped so much – it broke the day up and stopped Caleb getting bored.”

Meanwhile, Caleb’s dad, Jamie, and Jenna spent alternate weeks in the hospital and at home with their other children. They stayed in GOSH Charity-funded family accommodation, where Jenna says they had the support of other families going through similarly challenging experiences. “We would see each other every week for about five minutes, have a quick hug and then go our separate ways,” Jenna says. “It sometimes got quite lonely.

"But thank God for the other families we met, they really helped us along the way. We met two families who were on the Berlin Heart at the same time as us, as well as other families on Bear Ward and in the accommodation, which was lovely.”

Although everything seemed to be going well, one day Caleb lost movement in his right side. He was taken for a CT scan, and Jenna rushed back to London from their home in Wales to be with him and Jamie. The scan revealed Caleb had had two strokes, with a second scan later showing a third stroke on the opposite side of his brain.

“We were taken back down to intensive care. We were told that it was so severe, it was basically life or death and we had to take it hour by hour,” Jenna says. “We asked if we should bring our other kids in, just in case, and they said yes as they didn’t know what was going to happen. They said the chances of him waking up were quite slim.”

Over the next 24 hours, Caleb had numerous short seizures as his parents waited anxiously to see what would happen. “Then our kids came in and it’s almost like Caleb turned a corner once he heard their voices. He got through that night and within a day or two, he was back watching his tablet and giggling,” Jenna says. “Within a week, we went out of the cubicle and back into the bay where he went on to recover from his stroke. He had physio and occupational therapy every day – it was intense but then we got transferred back upstairs to Bear, which was amazing.”

Unfortunately, on Christmas morning, Caleb had to go into surgery again. It was a stressful time for his family, but Jenna says they tried to make the most of it. “We managed to have a cubicle and the family all came to the hospital to have Christmas Day together, and we were able to spend Boxing Day together, too,” she says. “As Caleb was on a Berlin Heart and it was in the middle of COVID, we weren’t allowed on the bay, but we spent time together in the sensory room and on the landing so the kids could see Caleb.”

Being in hospital over Christmas was “a lot better than we thought,” Jenna says, thanks to the staff who go above and beyond to bring magic to the wards. “Father Christmas visited, and we decorated our bay. They gave us Christmas dinner in the canteen, which we ate together while Caleb was in surgery. The staff brought so many presents round for Caleb and they made everyone feel so welcome.

“The idea of spending Christmas in hospital was really daunting, but it was actually a really lovely day. All the staff were so kind … We had a room together, so we did presents and played some games.”

On New Year’s Eve, the family got the news they had been waiting for: a donor heart was available. Caleb went into surgery that night.

“To be in surgery on Christmas Day and then New Year’s Eve for two completely different things was just crazy – everything happened very quickly,” Jenna says. “While Caleb was in surgery, we went onto the hospital rooftop to watch the fireworks at midnight, which was so peculiar, but it was almost perfect.”

After a successful surgery, Caleb recovered in intensive care for a few weeks before returning to Bear Ward. He was discharged at the end of January 2022.