‘George The Heart Warrior’ – His heart Journey so far… on The George Broude Team GOSH Fund.

George meets GOSH and a letter you never expect to read in your own home.

Having a child diagnosed with additional needs can be hard to accept. The realisation of how poorly George was first really sunk in when we received our first letter from Great Ormond Street hospital just before his second birthday. It is known as one of the world’s best hospitals for the sickest children in our country and in some cases the world. It’s a letter you never expect to open in your own home.

George had lifesaving open heart surgery in April 2018 and now GOSH will be giving George continued support throughout the whole of his childhood for secondary rare heart condition that he has developed post-surgery.

GOSH has saved and transformed our son’s life not just once but several times. George recently developed another heart condition that GOSH took rapid action on and has once again proved how exceptional and world class they are by detecting his rare heart condition instantly.

George has had to have three further operations post open heart surgery to try and correct his condition. Despite the surgeons making huge improvements to his heart conditions during each operation, George will require a lifetime of observations, medications and

potentially, further operations including the fitting of a pacemaker. He is currently on a variety of medications including the anticoagulant Warfarin. He recently had a loop recorder (a bit like a permanent ECG monitor) fitted under his armpit that sends heart rhythm information to the Cardiac Pacing team at GOSH overnight. The combination of the medications and constant monitoring means that we can leave the hospital environment and be at home. His heart will never be perfect, but each day research is making so many advancements in cardiac care that we feel George has a very bright future ahead of him. GOSH understands the importance of allowing children to develop in their own homes surrounded by their family, friends and community with the reassurance of support at any time should we need it.

GOSH not only support us as parents but also Alice, George’s older sister. They provide a fantastic and holistic service and we feel that the accommodation the GOSH charity provides for parents and families is such a fantastic cause. I’m looking forward to raising as much money as possible for The George Broude Team GOSH Fund and parent accommodation. Our first target amount for the fund is £10,000.

George’s undetected heart defect was especially hard for Alexa to deal with as her mother, Rhona Marsh, recently passed away whilst waiting for heart transplant. Alexa has been reassured that the two different heart conditions aren’t linked but that it is just an unfortunate coincidence.

George’s Heart Journey began at just 4 hours old.

George was born with a rare congenital heart defect similar to a heart condition called Ebstein’s Anomaly and he also had a hole in his heart (Atrial Septcal Defect). We weren’t aware of his heart condition until he was a few hours old and his wellbeing started to rapidly deteriorate.

Hearing the news that your son is very sick and watching your newborn son being put into an induced coma to save his life will never leave us.

An hour or so after I gave birth to George I had told Daniel to go home and get some rest. Having to phone Daniel in the early hours of the morning to say that his newborn son was now very poorly and come to the hospital was a very upsetting and sickening feeling. This moment in my life has changed us as a family forever and given us an inner strength we never knew we were capable of.

George was transferred from Stoke Mandeville Hospital in Aylesbury to The John Radcliffe Hospital in Oxford in a Neonatal Special Ambulance Transfer Service (SATS). George spent two weeks in the Neonatal Intensive Unit (NICU) at Oxford John Radcliffe who were in discussions with GOSH’s cardiac team daily. At one point we were informed that George might have to be urgently transferred to GOSH for an emergency operation. The nurses and Doctors caring after George completed miracles hourly and fortunately he didn’t need open heart surgery until he was two years old.

I don’t think we have never hugged a person as hard as the paediatric doctor who told us that he didn’t need an operation immediately. I think the doctor was in a state of shock himself at our reactions. Dan and I just remember trying to get our breath back but wanted to jump with joy at the same time. It’s one of those moments that you can’t really explain and don’t want anyone to ever experience again.

During his first two years George’s cardiologists told us to treat him like a normal boy and he coped really well despite having medical difficulties when trying to fight normal childhood illnesses such as chicken pox and croup in which he ending up back in hospital.

What makes GOSH so special

Each time we visit, the staff and volunteers at GOSH gave us a feeling of positivity and reassurance. We knew our son is being cared for by the world’s best. Medical professionals that go beyond their job roles to help very sick children and their families by doing small things that mean so much to the families involved.

One nurse who looked after George,knew how upset we were at missing Alexa’s sister’s and brother-in-law’s 25 years wedding renewal ceremony. She found a room close by for us to get dressed in our wedding outfits. George could only have his suit jacket on over his

shoulders as he had so many tubes and wires attached but nurses like that make such a difference. Raising funds for GOSH is the least we can do to give back for what GOSH have and are currently doing for us.

There is so much Strength in Kindness

George’s cardiologists, electrophysiologists and cardiac nurse team have always told us to treat him like a normal boy, so don’t be shocked if you see him running around a one of the many events and thinking he doesn’t look very poorly. He is a vison of how strong and brave children are despite their bodies fighting an everyday battle. The many children at GOSH have shown us the importance of enjoying life to the full despite the difficult and unpleasant things happening. We as a family have learnt so much from all the children at GOSH but especially the importance of kindness, belief, hope and love in your lives.

The communities we are involved in as a family can be different day to day. We are involved with the hospital community, library, local restaurants, local schools, shops, GP surgeries, local pharmacy, church, synagogues etc. Each of these communities has gone out of their way to make us feel at home. We as family will never forget the generosity shown so far and we hope everyone will rally together again to support The George Broude Team Gosh Fund.

It’s incredibly tough at times dealing with a child that is extremely poorly. Focusing on these events and coming together as a community helps us gain so much strength as a family. Our family motto is: there is so much strength in kindness.

Thank you for your support and donations.

Love

The George Broude Team GOSH Fund

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