Life after transplant: one year on

When he was just four years old, Mason became the smallest person to undergo a lung transplant in the UK. One year on, we spoke to his mum, Rebecca, to find out more about their experience and family life after the transplant.

"Mason was born two weeks overdue, weighing 7lb 10oz.  Soon afterwards I noticed he was ‘snuffly’ and despite feeding all the time, he was struggling to absorb food. He also became pale and sweaty after eating.

"At eight months, our GP referred Mason to a consultant paediatrician at our local hospital. Mason had a number of tests, including an ECHO (an ultrasound of the heart) which showed his heart was damaged on the left hand side and, on the right hand side, was squashed against his lungs.  

"Mason was transferred to Great Ormond Street Hospital (GOSH), where he was diagnosed with pulmonary hypertension, a rare blood vessel disorder of the lungs. Doctors gave him epoprostenol (epo therapy) to help dilate the blood vessels in his lungs and improve the amount of blood being pumped around his body.

"After a month on the Cardiac Intensive Care Unit (CICU), Mason was discharged and continued with epo therapy at home. We were really lucky that one of the nurses, Yvette Flynn, put us in touch with the social team straight away. Our local community nurses actually travelled to GOSH to meet Mason before we were discharged. They explained what support they would be able to provide when we got home and helped us organise the special milks he would need for his feeding tube.

"Before his transplant, Mason had to wear a backpack 24 hours a day to administer his drugs. Even bathing him was a two-person job as we had to try and keep the pump (and the entry point on his skin) dry. His heart was producing so much adrenalin that he wouldn’t normally sleep through the night either. Sometimes we’d still be trying to get him to bed at 1am.

A new pair of lungs

"The option of transplant had been mentioned frequently, so when he was put on the waiting list, as a family, we felt ready. His older sister Indianna had lots of questions for me, like when would Mason’s transplant take place? How would he be given new lungs? Could he die? They were difficult to answer but we were as honest with her as we could be.

"We got the call to say a set of lungs had become available came at 6:15am. We were calm and took Indianna to stay at with my mother-in-law before travelling down to GOSH by ambulance.

"At 3pm Mason went in for surgery.  After the transplant had taken place he experienced some bleeding but we were told by his surgeon, Professor Elliott, that it had gone well.  An ECHO showed his heart looking much less swollen, which was a huge relief.

"We were supposed to come home after four weeks but, that last weekend, Mason started coughing. He’d developed an unsafe swallow from the surgery, picked up an infection and needed intravenous antibiotics.

"After a further two weeks at GOSH, it was a huge relief when we were finally told we could go home. I was really looking forward to seeing Indianna again as, other than a brief visit from her on Mother’s Day, I’d only been able to speak to her on the phone.

Family life

"At first, it did feel as though we were holding our breath a little bit, but we settled back into a routine very quickly. We were already very organised from looking after Mason before his transplant so we just needed to tweak a few things, like changes to his medication.

"We no longer have to make epo and he doesn’t need to wear his backpack. He will always need to take anti-rejection drugs but only twice a day, so things are definitely less restrictive than before.

"Mason started school last September and really loves it. At nursery, his friends used to push him around on a trike because he didn’t have the energy or co-ordination to push himself. He’s not able to speak but we always sensed that he wanted to be active; now he actually can be. It was lovely to see him climb a slide and go down himself for the first time. Before, we’d have to pick him up and push.

"Indianna’s great with him. She’ll kick a football for him in the garden, and he likes to lie on the trampoline while she jumps around him. His attention span is better too, which I think must be because he feels physically better inside.

"I’m really looking forward to going swimming as a family. We were hoping to go last month at Alton Towers but he broke his foot and was still in his cast. I’m determined to take him this summer instead!

Ongoing support

"Mason’s always going to need check-ups, and we do have to be mindful of keeping him healthy. But even now, over a year later, we know the team at GOSH are always there to help. If it’s not urgent, I’ll send them an email, but if I want to speak to someone, I can also page them. They’re very good at getting things sorted for us.

"Currently, we visit GOSH every couple of months but we’re going to see a lung specialist at Birmingham Children's Hospital next month. Hopefully then Mason will be able to have his check-ups there and we’ll only need to travel to London twice a year.

"We’re lucky that our GP and local chemist are both very supportive. We have a key worker too, who helps arrange other aspects of his care, like applying for an oversized buggy and providing respite through the Take a Break scheme.

"I know that, unfortunately, not everybody gets as much help from their local health authority as we have, but I’d definitely urge other parents to find out what support is available and what benefits you’re entitled to. It’s especially important if you’ve got other children. You’ll want to do things as a family and there may be times when that isn’t possible, so finding ways to make sure your other children don’t miss out is helpful.

"Remember to take the time to breathe too. Getting home from hospital can be a big hurdle in itself, so don’t feel forced into thinking everything has to be fine straight away. Take things at your own pace. Make time to live a little and just enjoy settling back into family life.”