A donor’s generosity gave Brandon a new breath of life
Friday 3 August 2018
When Queenslander Brandon Fletcher was 15, his life and that of his family took a dramatic turn.
Severe complications from a bout of the flu left him in hospital. Over a period of months his condition deteriorated until one week before his 16th birthday, doctors told his mum Anna that Brandon urgently needed a double lung transplant.
With nothing to do but wait and hope, Brandon’s family watched on as he was placed on extracorporeal membrane oxygenation, or ECMO, a process that kept him alive by oxygenating his blood outside his body.
Days passed that Anna describes as feeling like years before a call came; there were lungs available, healthy lungs. Brandon went in for surgery.
Just over a year later, Brandon is getting on with life as a 17-year-old boy, after a successful double lung transplant. We spoke with Brandon and Anna about their journey, what life is like now, and what they’d say to people considering becoming an organ donor.
Q: How did it feel to learn that the only way Brandon would live was through the donation of someone else?
Anna: I was initially told in October 2016 that Brandon would need a transplant in the next 12-18 months. But then his diagnosis was changed, they thought he might not need to have a transplant. With medication and a few other surgeries, he might be able to have a life, but like a very bad asthmatic. Initially I knew it was something that might have to happen, and sooner rather than later, but it didn’t sink in at that time.
But then when he became very unwell…there was a lot of guilty praying. Because on one hand, we really needed for Brandon to receive a donation for him to live. But knowing that someone else had to lose their life for that to happen? That’s where the guilt comes in.
Brandon: I was very out of it at that point.
Anna: He didn’t know initially – because he was under 16 the doctors didn’t want him to know that that was the worst-case scenario. He didn’t know until February the next year, and it was March when his health went really quickly downhill.
Q: When did donation become not just a ‘maybe’, but a must?
Anna: He got really sick. One lung was trapping air, and the other lung had collapsed. So he was intubated one morning, and they listed him on the National Register. He officially had the sickest lungs in Australia. Within two hours we had an offer of lungs – those ones didn’t end up being the right ones for Brandon. But it was only nine days later that he got his lungs.
Q: How did the family cope with what was happening?
Anna: To be honest, we’re still trying to cope with it now as a family. I think we all have a bit of PTSD, I know that Brandon definitely has PTSD. We’re trying to find our new normal.
Q: When did you know that the transplant had been successful?
Anna: In terms of success, they know pretty much straight away whether you’re going to have acute rejection, though acute rejection can happen at any time. Chronic rejection can also happen at any time and is also an ongoing process.
We knew that Brandon didn’t have acute rejection immediately after surgery – they were really quite happy with how the surgery went.
With Brandon’s surgery they actually had to leave his chest open, because the lungs that he received were a bit too large for his chest. And also because of the damage done by his old lungs. When I say open it was sealed…but with like a plastic wrap.
Q: What did it feel like to find out that the surgery had been a success?
Anna: The first thing that I saw in almost a week was my son’s chest rising and falling. He wasn’t breathing by himself yet, but he was breathing. That was enough for me.
Q: Brandon, do you remember what it felt like to breathe through your new set of lungs for the first time?
Brandon: Different. I can only really describe it as different.
Q: What is your ongoing recovery like?
Brandon: I’m slowly getting there. I’m excited about little things, like being able to go out.
Anna: And not have an overprotective mother!
Brandon: I take a lot of medication. I don’t have too many doctor’s appointments, but I still go in to the hospital often enough.
Anna: He was in hospital just last week, with a bit of a bug that he picked up. It’s that time of year!
Brandon: I’m at school again. My attendance is horrible!
Anna: He’s doing senior school over three years, finishing year 12 this year. That’s been one of the hardest things for him being sick, seeing his friends graduate last year.
Q: What are the plans for after school?
Brandon: I want to get into medicine – cardiothoracic surgical medicine. I’ve been inspired by the surgeons who helped me.
Q: What would you say to potential donors who are thinking about donation, or to their families?
Anna: You can’t take it with you. If you can give someone a chance at life, why wouldn’t you give them that opportunity?
My daughter was only 13 when she decided she wanted to be a donor. She said, “I can’t take it with me mummy, I want someone else to be able to live because of me.” For me, I would honour those wishes. Just knowing that a part of her was living on, would be really special to me.
Particularly since Brandon has received a donation, I’ve considered being a living donor. We just don’t have enough donors out there.
Every day, I say thank you to Brandon’s donor, and I say thank you to his donor’s family, because we wouldn’t have Brandon without them.
Brandon: I agree with everything mum said!
Brandon and Anna would like to extend their thanks to the ICU and Ward 1e at Prince Charles Hospital and Director Marc Ziegenfuss, who promised Anna he would get Brandon to transplant, Lady Cilento Children’s Hospital PICU, Wards 10a and 9a, and Dr Juerg Burren, Dr Linda Mellick, the transplant team at The Prince Charles Hospital, Dr Vickas Goyal & respiratory nurses Sandy & Peta.