Tiny Tickers’ National Parent & Carer Panel
Tiny Tickers’ National Parents & Carer Panel helps to shape the future of our charity and ensure we can do even more to help babies with heart conditions. Made up of parents and carers with direct, and personal, experience of congenital heart defects in babies, they play a vital role in ensuring our work is as effective as possible.
My son Charlie was born with Tetralogy of Fallot which was detected at my 20 week scan.
Charlie received open heart surgery when he was four months old and, nowadays is a very happy and active four year old child, who enjoys playing and running around as any other little boy of his age.
I volunteer for Tiny Tickers because I strongly believe that early detection makes a huge difference to babies and parents affected by CHD. We were lucky to find out about Charlie’s condition prenatally but unfortunately there are still far too many cases of new-born babies which are sent home with no one realising that their lives are in danger. Tiny Tickers is changing that and I am very proud to support their mission and work.
I’m mum to Jai who is now a happy, healthy 11 year old boy. Jai was born with simple transposition of the great arteries, which was diagnosed at our 20 week scan. I am part of this panel as I really believe that early diagnosis of congenital heart disease makes a huge difference for the affected child and parents. We were very lucky to have had the time to prepare ourselves and to have surgical staff on hand as soon as Jai was born. I would like to see greater awareness of congenital heart conditions and an increase in early diagnosis to ensure all babies get the best start in life.
I am mum to Susie (7) and Freddy (2) but it was my second daughter, Grace, who was diagnosed with a serious heart defect at my 20 week scan. Despite receiving the best medical care available, we lost her at one day old. I was shocked when I found out how common congenital heart defects in babies are and even more so by the discovery that so many go undetected during pregnancy. Although early detection didn’t save Grace, it at least prepared us for what lay ahead – something that is denied to so many parents-to-be at the present time. But this can change. Tiny Tickers’ mission to increase early detection rates and save lives is entirely achievable and I’m proud to be a small part of it.
Ruaidhri was my second child. His heart condition was not detected until after he was born and he had his first surgery at 6 days old. In every other way, he was a normal baby and reached his milestones. At 20 months old, he required further surgery and after six weeks in hospital, he was discharged. Sadly, two days later, Ruaidhri had a massive cardiac arrest. We lost him at just 21 months old.
I decided to get involved in Tiny Tickers to make a difference – to improve detection rates so more families can prepare themselves for what is to come. Parents and families need to know they are not alone – that there is information and support available. I want be the voice for babies like my son who lost the fight.
My daughter, Elise, was born with Tetralogy of Fallot in 2014. Unfortunately this wasn’t detected until a routine visit to the GP when she was nearly a year old. Luckily for us, her subsequent surgery was successful and she’s leading a happy, fun-filled life. I’m proud to be involved with Tiny Tickers as their primary mission of increasing early detection rates means more CHD babies going on to live long and healthy lives. Also, the information and support they provide for parents and carers can be invaluable.
I joined the Tiny Tickers Parent Panel as I wanted to help spread awareness of CHDs, share my own experience, and offer advice and support to other parents who were going through the same thing as I had. My son was born with Transposition of the Great Arteries, VSD and ASD. I was not diagnosed in pregnancy, so it was a terrible shock, and was extremely traumatic for my husband and I. Luckily my little boy is now 3 and the absolute light of our lives, but I’m aware our story could have been very different. Early diagnosis can save little lives – it’s as simple as that, which is why the work that Tiny Tickers do is so important. As I found charities and support groups so helpful, especially in the days after my son was born, I set up my own Facebook group for parents of TGA kids in the UK. This forum now has over 370 members and provides support and the opportunity to meet other parents. I hope my involvement with Tiny Tickers is useful and inspiring.
Are you a parent or carer that has been affected by CHD? We are looking for more members of the Parent & Carer Panel to help steer Tiny Tickers, ensuring that parents’ needs are core to our work. Read more about it here.