Parenting after my son’s heart transplant: what I’ve learnt

Louise Hannon's son Joe

When six-year-old Joe became severely ill with heart failure, he was rushed to Great Ormond Street hospital. Six months later, a heart transplant saved his life. His mum, Louise Hannon, talks us through her family’s ordeal, and explains why organ donation is so important…

Louise Hannon, a mum of three children aged ten, seven and nine months talks about how her son’s heart transplant has impacted her family’s life.

Nearly four years ago, having just moved to Australia, my eldest son Joe became suddenly ill. We were told he was having severe heart failure and may require a heart transplant. As his condition worsened quickly, the decision was made to fly us back to the UK for treatment at Great Ormond Street children’s hospital.

We ended up spending six months in hospital, mostly in intensive care, as Joe required a Berlin Heart machine to keep him alive until transplant. This caused many complications. The most significant of these was a stroke on Boxing Day 2013, which left him paralysed on his left side. After the agonising wait, he received his heart transplant in January 2014 and then began the lengthy process of recovery.

To say our time in hospital was a long and stressful ordeal feels like something of an understatement. We felt so helpless as we watched Joe experience such awful suffering. Each day we waited, wondering if, and when, we would get the call to say a heart had become available. It was such a difficult feeling to be desperately wanting the right heart to come as soon as possible, whilst also knowing that for this to happen a family somewhere would be experiencing tragedy as they lost their loved one.

The wonderful lady that donated her heart to Joe also donated a number of her organs to help save others’ lives. We were given the opportunity to write to her family and received a card back telling us all about her life and her decision to be an organ donor. Her family said they were comforted by the knowledge that something so positive came from her death.

Joe, now aged ten, has learnt to walk again, attends school and manages without a wheelchair for much of the time. He has conquered no less than fourteen operations and countless needles. He has shown such impressive resilience in the face of what have seemed insurmountable hurdles.

We have really come a long way, but life with a child with complex health needs and disability is definitely challenging and constantly changing. Joe gets tired very easily and so we have to pace him carefully. We are learning to give up guilt over screen time and accept he will watch a lot of TV and films as this just works when he is tired or unwell which, unfortunately, is fairly often.

We are slowly learning how to support him as he struggles to come to terms with what he has been through, and to care for his sister who has gone through so much at a young age – along with him.

We are learning to manage our expectations of what we can achieve and recognise the constant stress and worry involved in taking care of him. There are ongoing hospital visits, operations and changes to his medication with different unwelcome side effects. He has been admitted to hospital a further four times since his transplant with infections or heart failure.

These stays in hospital – along with Joe often being unwell – have led to us re-evaluate our careers, through both necessity and choice. I also need to allocate time to the large amount of admin and meetings that seem to be involved with a child with complex needs. I sometimes feel like his PA, mum and nurse all rolled into one!

We have chosen to feel hugely lucky that he survived and has made such an amazing recovery rather than looking at other people’s children who are healthy and energetic and feeling like we’re missing out in some way. The future is uncertain, though. Transplants remain a palliative option with the average life expectancy after heart transplant being between ten and twenty years. The chances of having a second transplant are quite limited due to the lack of donors.

The consent rate for organ donation in the UK is one of the lowest in Europe. If it hadn’t been for the selfless generosity of his donor, Joe would not be here today. I would encourage anyone who would be happy to donate their organs in the unfortunate event of their death to sign up and be a life saver too.