Last month at our ShopUp event, I had the pleasure of meeting fellow London mum, Louise Hannon. We started talking about children and life in London, and she told me her incredible story about her son’s illness, his life-threatening surgeries at Great Ormond Street Hospital and his heart transplant through organ donation. We spoke about organ donation and how important it is to spread the word about it. Did you know that, according to statistics, more than 90% of us would consider donating our organs and yet, here in the UK, only about 30% of us are registered? It all comes down to spreading awareness.
Here in the UK, more than 10,000 people need a transplant and three people die every single day waiting for one. In the US, there are more than 120,000 needing a transplant and 17 people die each day waiting for an organ. Also, one organ donor can save up to eight lives!
I was so moved by Louise’s story, we asked her to share her story with us and she very kindly agreed. Here is her story, a rather brief re-cap of a very tumultuous past 18 months:
On 28th January 2014, my six-year-old son Joe had a life saving heart transplant at Great Ormond Street Children’s Hospital. This was due to the amazing generosity of a lady who, through organ donation, chose to save other’s lives in the event of her death.
Up until summer 2013 he had been a non–stop little boy, full of energy, who loved being outdoors, playing football and climbing trees. We had just moved to South Australia when he suddenly became unwell, and Joe received a diagnosis of ‘Dilated Cardiomyopathy’ – serious heart failure that would most likely require transplant in order for him to survive. We were utterly devastated and struggled to deal with the news especially being on the other side of the world away from friends and family. Calling our parents back in the UK to tell them the news was incredibly hard and the first of many difficult phone calls we had to make to them over the following months.
After a month in Adelaide Women’s and Children’s Hospital Joe was repatriated back to London in a medical jet in the hope that he would receive a heart transplant more quickly in the UK. However, Joe’s heart transplant did not come as quickly as we had all hoped and he continued to decline despite the maximum IV drugs he was on. It was frightening to see how quickly his heart was giving up and the effect this had on him as he lost huge amounts of weight and would lie listlessly on the bed unable to really talk to us. We were desperate to get the phone call each day to say a heart was available. We were also aware though that when a heart did come that meant a family somewhere else would be experiencing tragedy and this was such a difficult process to reconcile ourselves with.
We were told his only option now was to undergo open heart surgery for a ‘Berlin heart machine’ to be fitted to keep him alive until transplant. He had a number of serious complications whilst on the machine requiring further surgery including pneumonia and bleeding into his lungs. There was a huge amount of uncertainty as to whether he would pull through and we literally held our breath for weeks willing him to fight and get better. Our four months in intensive care was an awful experience of watching him suffer horribly. I naively hoped that, though unconscious, he wouldn’t suffer pain. I hoped that it was only us suffering as we watched and waited to see if he would recover. The reality was that he was often conscious and very distressed, unable to speak or swallow due to the breathing tube in his throat. We would watch him cry and feel completely helpless. This was the hardest part of the entire ordeal.
His biggest complication arising from the Berlin heart machine was the severe stroke he suffered on Boxing Day, 2013, which is one of the most significant risks associated with the Berlin Heart machine. After the first brain surgery to relieve the bleed in his brain we were told he would not survive and we asked my parents to bring our three year old daughter up to the hospital to say goodbye. They operated for a second time as a last ditch attempt and he miraculously survived, but was left paralysed down his left side. A heart finally became available a month later and Joe had his long awaited transplant. We then began the arduous road to recovery, involving rehab to help him learn to walk again and use his left arm. Joe spent a total of six and a half months in hospital, enduring thirteen operations and a further six weeks in a children’s neurodisability rehab centre.
He is truly a living miracle and we are hugely proud of all that he has battled through at such a young age. We are slowly coming to terms with what has happened to our family in the last eighteen months and the far reaching effect this has had on all our lives. We never thought something like this would happen to us. We had coasted along in life ticking off our plans for career, children, and travelling, believing we were in control of our lives and future. As Christians, this experience has taught us we need to rely on God who is the only one who has ultimate control and it has been a hard test of our faith.
Joe takes lots of medicines every day and will do so for the rest of his life. He can now walk short distances and has returned to his old school part time. Day to day life holds lots of challenges for him that can leave him angry and depressed. He is much more volatile as a result of his stroke and tires easily. We also live each day knowing that a heart transplant is a palliative option, not a cure, with the average life expectancy being ten years. As we near the first anniversary of our son’s transplant we think about the woman who donated her heart to him and the family she left behind. To see our son in the garden kicking a football around again or playing with his sister reminds us of the incredible gift she gave us. (Below are some photos of Joe since coming home from the hospital.)
Please consider signing up online for organ donation, for yourself and your children that in the unfortunate event of an untimely death, a second chance at life for others can be brought out of tragedy. Signing up for organ donation costs nothing but could mean everything to another family facing their worst nightmare.
Louise, thank you so much for sharing your story with us, and we wish you all the best with your two beautiful children.