12 year old James has successful heart transplant during lockdown7 October 2020
In July 2019, James was in his last couple of weeks at primary school, and he began to feel unwell. He had no energy and just wanted to sit on the sofa which was really unlike him – especially with his ADHD.
James has ADHD and every three to six months we go to see our ADHD nurse at our local health centre and she does general checks – height, weight, blood pressure, and so on. During our visit to her in February 2019 she couldn’t get his pulse because it was racing so fast. We made an appointment for James to see our GP who conducted an ECG. Upon seeing the results he asked us to immediately take James to the A&E department at our local hospital, the Alex. At the hospital they also checked his heart rate, and did another ECG, which showed that his pulse was still racing. James sat there as if nothing was wrong, and didn’t feel ill at all. He was immediately transferred by ambulance to the Evelina Children’s Hospital in London as his tachycardia was just out of control. The doctors at the Evelina advised us that James should have a procedure called an ablation.
We were shocked at this news and were worried about James and the procedure; but after consulting with the doctor, James had the ablation. Afterwards James’ condition improved, but his heart rate was still faster than it should have been. Although James was allowed to come home, he continued to be monitored by doctors at the Evelina and the Alex. He had regular ECGs and sometimes wore a 24hr tape which recorded his heart’s performance.
In July 2019, James was in his last couple of weeks at primary school, and he began to feel unwell. He had no energy and just wanted to sit on the sofa which was really unlike him – especially with his ADHD. He was lethargic and had lost his appetite. We took him to the A&E at the Alex, and they said it was probably just a bug as he’d been sick earlier that day. We went home thinking he would feel better in a couple of days. A few days went by and James was still unwell so we thought some fresh air would do him some good. We went for a walk in the country, but James could not walk very far without having to sit down. We knew it had to be more serious when James kept vomiting and his dad needed to carry him back to the car. We looked up James’s symptoms on the internet and then realised he could be in heart failure.
We took him straight back to the hospital. There James had a chest x-ray which showed a build-up of fluid around his heart. Again he was transferred by ambulance to the Evelina where they confirmed the diagnosis of heart failure. The doctors did not know what caused it – they did genetic testing on all of us but nothing came back and it didn’t look like it was a virus. It came completely out of the blue. We were told James would have to remain in hospital for at least a week or two.
James’s Dad and brother found travelling up to London every day very tiring. After a couple of days we were offered accommodation at the Ronald McDonald House which meant that we could all be together, and gave us one less thing to stress about. We don’t know how we would have coped without their support. We would take turns with James in the hospital each night while the other would stay in Ronald McDonald House with our eldest son.
After a few weeks of tests and treatment, James was referred to GOSH. Their cardiologist told us James had three options: the palliative route, stay on medication to control symptoms and wait for a new heart, or have an LVAD which would buy James some time and allow him to build his strength and be stable enough for when a donor heart was available.
My husband Graham and I decided to ask James what he wanted to do, and he said he wanted the LVAD so he could go home. James was transferred to Great Ormond Street and placed on the transplant list; then on August 31st 2019, he had the LVAD implanted into his heart.
For the next couple of months James recovered in hospital. During this time Graham and I stayed in accommodation provided by GOSH. We learned how to change James’s dressings and were trained on how to manage his device and give his many new medications. It was a big thing for us to deal with, let alone for James who was just eleven at the time. James remained on the heart transplant list, but as he was now stable, he was not on the urgent list.
It took James a while to get used to the device and having to carry a bag containing a controller unit and batteries with him everywhere. He had to get fit again too because he’d lost so much weight and had been disappearing in front of our eyes. However he had already started to regain his strength when he was discharged. James eventually left GOSH at the end of October – by which time he had been a hospital inpatient for three months.
James continued his recovery and spent Christmas and New Year at home. But in January 2020 he acquired an infection in the driveline of the LVAD, and James was admitted back to GOSH for IV antibiotics. Despite the excellent treatment he was receiving, the infection would not go away and doctors were worried the infection might travel up into his heart. We only had our lively son home for a couple of months, the LVAD had given him a second chance, but we were now worried the infection was threatening to take him away from us. The infection did not go away, but the antibiotics did halt its spread. Eventually James was transferred back to our local hospital, and a few weeks later he was allowed back home.
James continued to be prescribed antibiotics to keep the infection in check, but he could not remain on antibiotics indefinitely. So in March 2020 James was put on the urgent transplant list, because by now a heart transplant was his only option.
The following month I received a call from the heart transplant team. It was 1130 on a Wednesday morning and I was told there was a possibility of a heart transplant later that day. The car taking us to GOSH would be with us within the hour. I was given further instructions, but couldn’t process anything else as my mind was in a spin. It was the call we had been waiting for, but it still caught me off guard. We were in COVID lockdown and Graham was working from home, so I told him the news before we let James know.
James was excited, nervous and scared. He said, “I can’t have a new heart, what about the Covid?” He was really worried about going into hospital, but we reassured him that things still had to carry on during the pandemic and it would be ok. When James got to the hospital he had some blood tests to check his compatibility with the donor heart, but after a number of hours had passed we were told there wasn’t a good enough match and we would be going home.
On 1st May I was woken at 7am by my phone ringing. It was the transplant team telling me there was another possibility of a heart transplant and, just as before, a car would be with us within the hour. We told James and he was nervous, but we had all been through this before which made it a bit easier. Coronavirus restrictions meant that only one person could go with James, so when the ambulance car arrived James and I said our goodbyes to his dad and brother before we set-off.
When we got to the hospital James had the blood tests just like before. James and I were also tested for coronavirus, but to be honest I wasn’t really worried about Covid by then; we were just focussed on James getting a new heart. Thankfully both tests for coronavirus came back negative.
After hours of waiting we were eventually told James would be going to have the transplant and that the operation would be at around 9pm. James finally went down to the theatre just after midnight on May 2nd. He walked down to the operating theatre but was terrified when he got there. It was hard for me to leave James after seeing him so scared and afraid. But the hardest thing was waiting alone because my husband and eldest son were not allowed in the hospital and had to stay at home.
James’s operation lasted for around 9 hours, but all I could do was wait in the room I had been given and try to sleep, there was nothing else to do. Our world had closed down and so I could not even go out for a coffee because nothing was open.
After the operation James’s surgeon told me it had gone well, and I was able to see James later that same morning. My husband and eldest son drove up to see me the day after James’s transplant to drop some things off. I met them outside but was told to keep at least two metres away from them. It was excruciating because I just wanted a hug but we couldn’t even sit in the car together.
James was heavily sedated for a few days after the transplant and when he woke up it was wonderful – the first thing he wanted was a drink of water. It took quite a long time for the anti-rejection meds to kick in but then he started to make a good recovery. Within a week he was up and about. No one at the hospital could believe he recovered so quickly – I think some of that was down to the LVAD which kept him strong until he could have his new heart. He was discharged from GOSH just seventeen days after the heart transplant.
James was 12 in April just before he had his transplant, and he missed out on the whole of year seven, so he has some catching up to do.
But the first thing James did when he got home was have a long soak in the bath – because he wasn’t able to have one with his LVAD because of the batteries. Oh, and of course he wanted to see his plants and play on his XBox. It was so wonderful coming home, but we are just taking each day at a time.
And we are so, so grateful to the donor family. They have lost a loved one, but their generosity has allowed our son to live. We will probably never know who the donor was, but we will be forever grateful that they saved our son. We hope their friends and family find some comfort that a part of them is still alive, and their heart is beating strong.