This is life in lockdown for Toby

Toby is a creative 14-year-old boy who loves cooking, playing ping pong, and splashing around in the swimming pool. Toby looks like a healthy young man today, but in his short life, he has undergone seven open-heart surgeries, had two valves and a pacemaker fitted, and a heart transplant. For the past twelve years, Toby has been cared for by Chestnut Tree House, and due to the outbreak of COVID-19, the family has been shielding in their home for over 3 months now.

Throughout lockdown, Toby has been keeping himself busy in the kitchen, learning new skills and doing his schoolwork. “Toby has just chosen his options at school, he’s chosen Food and Nutrition, History and Performing Arts”, says Dad, Lee. “So, he has spent a lot of time cooking some lovely food with his Mum in the kitchen.”

Despite the tough and uncertain times, the family is keeping positive, “It’s been nice to have some quality time together. Usually, we are at work and the kids are at school, it’s nice to have the chance to create some precious memories. The boys have been having great fun, playing ping pong, swimming in the pool in the garden, and we’ve all been playing games together and enjoying each other’s company.”

The family has been having weekly calls from Chestnut Tree House throughout the crisis, “the phone calls have been brilliant, they genuinely want to make sure that we are OK. If we have any concerns, we always know that Chestnut is on the other side of the phone, there’s always that support network out there. It makes things a little bit easier to cope with.”

This is Toby’s story

“It’s like going to my favourite auntie’s, it’s so warm and friendly and I get so excited as I know we are going to have fun.”

This is how Louise Nash, mum of 14-year-old Toby, describes her family’s visits to Chestnut Tree House.

“Toby was born with hypoplastic left heart syndrome,” says his dad, Lee. “His left heart ventricle was under developed and his heart was just the size of a 5p piece. He was born at 2am but by 4pm he started to go into cardiac distress. He was taken to the neonatal unit and then transferred to Southampton Hospital, where the diagnosis was confirmed.

“What this means is that the left side of Toby’s heart wouldn’t develop, but that’s the part that does 80% of the work. Toby had open heart surgery at just five days old and further procedures at three months and again at four years old, when he had two strokes. They re-plumbed his heart so the right ventricle did most of the work, but the life expectancy of his heart was reduced and we knew it would probably fail in his mid-teens. Sadly, it didn’t work – one of the valves leaked, which is a known issue, but quite rare, so they did a bovine valve replacement and then a further mechanical valve replacement, resulting in Toby being placed on the heart transplant list.

“From the age of six until he was 10, he was on the transplant list, but he did so well that he came off it. At the end of 2013, the valve failed again and Toby was put on the heart transplant list again. He had further surgery in 2015 to insert another valve with a never-before-performed surgery via a synthetic artery into the top of his atrium.”

Louise takes up the story. “We were originally under the care of Naomi House children’s hospice but when we moved to Felpham, we came to Chestnut Tree House. We had outreach care at first but felt we didn’t really need it because Toby was doing so well. But then Laura, our Community Nurse, nagged us – in a nice way! – to come to the hospice. She said, ‘You’ll love it’, and made sure she was with us for our first visit.

“She was right. We needed respite from life, from all the hospital visits, just to spend time together as a family. I always found it difficult to leave Toby in hospital but felt very comfortable about leaving him at Chestnut Tree House.

“During the second time of Toby being on the transplant list, which was three and a half years, we had three calls but each time the heart was an unsuccessful match, either in terms of size or blood match. It was always a strain because we couldn’t go anywhere, we had to stay within an hour’s travel of home and be ready to go at a moment’s notice. It was a constant worry but coming to Chestnut was always such a relief, knowing that there was 24-hour phone coverage and that an ambulance or helicopter could get there quickly and easily to pick us up.

“Finally, in October 2018, we got a call at 1pm in the afternoon. At first, we just thought we’d missed an appointment but when they told us there was a heart for Toby, I was scared but just said, ‘Yes!’ We had just 35 minutes to get ready and were blue-lighted to Great Ormond Street Hospital.

“The transplant operation was successful but then the rollercoaster started. Two hours in, the right side of Toby’s heart started failing and he started bleeding out. They put him on an ECMO machine (a machine that replaces the function of the heart and lungs) and inserted a surgical tamponade to stop the bleeding. They managed to stem the flow but when they tried to take him off the ECMO, his blood pressure crashed. They finally got him off the ECMO but all the surgery had caused kidney failure. He then had to go on permanent dialysis, it just went on and on. Then he started to reject the new heart so he had to have plasmapheresis – a type of chemotherapy which kills the blood cells that are fighting the heart. He also had to have a strong regime of drugs to avoid rejection.”

Lee says, “We spent 93 days in intensive care, and Chestnut were there with us all the way. Liane, one of the nurses, even rang when Toby was in a coma to talk to him. During that time, we pretty much lived at the hospital and had to leave Toby’s older brother, Elliott, at home with his grandparents. Every weekend, Elliott would make the journey up to London to visit his brother. He was so good for Toby. Toby wasn’t really interested in anything but Elliott got him talking and playing games – he really helped.

“But then Toby started to make a miraculous recovery. He started physio and we were able to take him out in his wheelchair to the rooftop garden. He had to have three or four nurses with him at all times so we ended up going to Pizza Express or Costa with a full nursing team – it was a surreal way to live. Eventually, after 93 days in Cardiac Intensive Care he was transferred to the heart ward, and after just five days on the ward, we went home.

“The surgeries were so complex and it was too stressful to go straight home, so Chestnut arranged step down care for us at the hospice. The staff reaction was amazing – when they saw Toby after his transplant and that he was OK, they just cried.

“Although Toby has a new heart, he still has lots of restrictions – his immune system is compromised, the right hand side of his heart is still not working to its full extent, he still has a pacemaker, he is on anti-rejection drugs, eight in the morning and five at night, he is prone to liver or kidney failure, he can’t go out in the sun because of the risk of cancer, he can’t do contact sports and has to avoid certain foods. But we have to remind ourselves that he is alive.”

“That’s why coming to Chestnut is so important,” says Louise. “We can recharge our batteries and just spend time together. There is so much for Toby to do – the pool, the computer, the garden and lots of board games. Whatever he wants to eat, the kitchen will do for him. He loves to swim so sometimes we just come for a swim and tea.

“I am spoilt too – everything is done for me and because I am not doing the cooking, etc, I have time to spend with Lee and the boys. Chestnut looks after the whole family – Elliott sees Clare, their Children and Young People’s Psychotherapist, who has really helped. Although we’re not religious, we are in touch with Stephen, the Chaplain – he always seems to ring at the right time.

“I really don’t know how well we would have coped without Chestnut. They have been a crucial part of our lives, like a second home, lifting our spirits and providing fun, laughter, friendship.”