Claire’s story in support of Organ Donation Week 2023
Life before Fontan
When pregnant with Vinnie, I was told life would be a rollercoaster and boy is it. I feared the worst carrying Vinnie, it was an extremely hard time for me, lots of tears and worry of the unknown. All these surgeries to face and what life will Vinnie have.
Vinnie was born and did so well. He gained weight and turned out to be a very chubby baby. We brought Vinnie home at 15 days old after his first surgery. He was reaching milestones and I went to baby groups and made lifelong connections with support networks like Little Hearts Matter who provided amazing support.
Vinnie had his second open heart surgery at 4 months old and we lived a fairly normal life up to Fontan, enjoying having family days out. Vinnie would be like the child next door bar he was a little purple in the lips, fingers and toes. He was active and let nothing stop him.
Preparing for the Fontan
As we are enjoying life the 3rd open heart surgery was always hanging over us. Part of you wanting to get it out the way and the other part of you wanting to run with your child. As we had Vinnie home with us and lived life quite normal it was extremely hard to hand Vinnie back over for the Fontan. Vinnie was 3 and it’s only now when I look back at Vinnie, I see how blue he was, and it became our norm.
I went in with a positive mind that this was Vinnies last surgery, all will go well and that will set him up till adult life when he may possibly need a heart transplant. My husband and I had positive minds and taking things day by day. We got into hospital mode and were extremely focused on caring for Vinnie and working in a shift pattern.
Post Fontan – Fontan Failure
We had a tough time in hospital and struggled a little as the last two surgeries went smoothly. The Fontan is harder mentally for us as your child is older and has a voice. Vinnie came out of hospital 18 days after surgery and we were over the moon.
We continued to have regular hospital appointments every 3 months. I remember seeing other families go to 6 monthly reviews and even 12 months, but we never got there. Our check-ups were happening during the pandemic so we couldn’t take Vinnie together, we had to take turns. One day my partner came back from the appointment with the heart breaking news that Vinnie is in severe heart failure. The cardiologist said that we needed to act fast. I was in disbelief.
The transplant pathway – Vinnie’s Catheter during the pandemic
Learning that Vinnie needed a new heart was mind blowing. Everything was happening so fast and all of it during the pandemic. The love and support we received from friends, family and charities like LHM was so valuable, but that said, it’s hard to put the stress and worry into words.
We first had to take Vinnie back to hospital for a week of tests. The results would be sent to Newcastle where his transplant would take place.
At Christmas time, Vinnie had to go in for a high risk catheter. As I discussed the risks with the medical team, Ben my partner had to listen via the telephone. The Covid restrictions were keeping us apart. This has got to be one of the worst days of my life, there was a high chance Vinnie wouldn’t survive because of the pressure on his heart. The talk was so upsetting and poor Ben having to listen to it all over the phone.
I remember having no choice but to sign the forms and hand Vinnie over. Ben and I had a good cry over the phone, it was so hard not being together. The day Vinnie went for the operation, Ben had to blow a kiss over the phone.
Being apart from Ben through the hardest time in our lives was extremely painful. I remember going to the hospital church and siting there in silence. Praying Vinnie will come out alive. What seems like days I sat and waited in his hospital bed when I heard footsteps coming down the ward, the cardiologist says, Vinnie is alive.
Wow wow wow. I really struggle to describe how that felt. The op went smoothly with no blips. We had a bed waiting in intensive care and also one available at Newcastle Freeman’s transplant ward in case it was needed. Thankfully it wasn’t. Vinnie recovered from his Catheter well.
Vinnie’s transplant assessment
In January, we headed to Newcastle for a transplant assessment. Vinnie powered through days of tests at the Freeman, as we went on a tour of what seemed like every single department in the hospital
Vinnie was and is super brave.
A week later we received a phone call from the transplant coordinator, Vinnie had been listed on the routine, meaning he could stay at home, but we were to be kept on call with a bag packed at all times. The call for Vinnie’s new heart could be in days, weeks or even years.
When I look back it’s all very surreal and it’s amazing what the mind and body can do when you have no other choice but to accept your reality and carry on.
Vinnie started school full time and was able to start enjoying himself again. We took family holidays and have lived pretty normal lives as we can. Even whilst we were waiting for the call for Vinnie’s new heart.
Vinnie’s heart function improving
Vinnie was on the list for 18 months. As the check-ups passed, Vinnie’s heart function was slightly improving, and he was in a stable position for long enough that he has now been paused on the list.
We don’t know how long this will be for, as there is no cure or fix, so who knows. We were told to go away, enjoy putting our phones on silent, take a holiday abroad and enjoy Vinnie. Amazing feeling but a whirlwind of emotions.
Vinnie takes it in his stride and has gone from strength to strength taking up swimming lessons and football. He is a real boy’s boy and despite the limitations of his heart, he is very sporty and loves the rough and tumble.
Vinnie, now 6 years old, is really getting into the groove of self-advocating for his condition, educating everyone he meets and embracing who he is. We are extremely lucky.
Here is Vinnie with motivational speaker Amit Ghose, Amit describes himself as an ‘advocate for the visually different’ and he attended Vinnie’s school to give a talk on confidence and celebrating who we are. Vinnie came home from school feeling inspired and said he will do talks like Amit when he is older.
Organ Donation Week
I have always felt strongly about organ donation, the amazing, selfless gift of another chance.
I have met people that have received the gift of life and feel so lucky that our paths have crossed. Huge inspiration for a family like us.
Over the years I have taken part in radio, TV and newspapers to speak about the importance of organ donation and sharing your wishes with your loved ones. It’s a really difficult and emotional conversation to have, but so important that wishes are carried through. I think if I am prepared to receive, I must also be prepared to give.
I would like to say a huge thank you to the amazing NHS staff that have helped us throughout this journey, and to Suzie Hutchinson and the Little Hearts Matter team for the support and encouragement over the years.
Thank you for reading my story, to be continued I’m sure.
Please follow this link to share your wishes – https://www.organdonation.nhs.uk/