I WAS BORN with congenital heart disease in 2003. When I was two days old, I developed jaundice and was brought to the neonatal intensive care unit in the Coombe where a heart murmur was detected.

I was referred to CHI Crumlin to undergo further tests. Here, they discovered that I had a bicuspid aortic valve (where the aortic valve contains only two cusps, or flaps, instead of three), dilation of the aortic root (when the first section of the aorta, where the aortic valve resides, becomes enlarged), and aortic stenosis (when the aortic valve narrows and blood cannot flow normally).

And so began a regime of hospital appointments every 6-12 months to check on my health and to see how my heart was functioning. As my condition began to worsen, I had to start on medication to keep my heart stable until my first surgery. This was a balloon dilation by means of keyhole surgery to widen my bicuspid aortic valve to help the blood better circulate around my body.

Keeping active

I have been incredibly lucky to be able to be an Irish dancer since the age of four. This is the only sport which I can be part of due to not being allowed to take part in contact sports because of the dangers.

Irish dancing has allowed me to stay healthy and my condition has had minimal effect on my heart due to the exercise and fitness involved.

It has also afforded me so many amazing opportunities. I have performed at the World Irish Dancing Championships in Dublin, Kerry and Belfast. I have even performed in The Mansion House in Dublin and at Disneyland Paris. I think it’s fair to say that Irish dancing has helped me to recover quickly from any procedures that I have undergone. I also like to think that being an Irish dancer with congenital heart disease has helped to inspire others that anything is possible in life.

Sinéad loves Irish dancing.

Unfortunately, as I was getting close to my 17th birthday, it got to the stage where I needed open-heart surgery. In the lead-up to the operation, I was very worried as I did not know what to expect and what my future would hold. I had support from so many people in my family and the hospital. I spoke with the psychologist, cardiac clinical nurse specialist and other staff in Crumlin to express my concerns and fears about this operation. These were people that helped to put my mind at ease. However, I was always worried that I would not survive the surgery.

Putting my trust in others

I had the surgery the following 6 January 2021. The night before, I was so anxious I could not even get into bed. I sat on the window seat the whole night. I walked to the theatre the following morning knowing that my life was about to change.

Delightfully my open-heart surgery was a success! They replaced my valve with a tissue valve – which is usually made from pig or cow tissue and is treated to avoid rejection – it may need to be replaced in the distant future. They removed an aneurysm in my heart too. I spent one night in intensive care and five nights in the Children’s Heart Centre before being discharged.

Sinead with her dad Anthony, mum Lisa, and her brother Anthony at Finnstown Castle Hotel.

Since this operation, I have moved to the Mater Hospital under the same doctor. I have annual appointments to check on my heart and my overall health. I have also gone on to achieve some major milestones in my life, including completing my Leaving Cert in 2022, passing my driving test in 2023, and purchasing my first car, a Ford Ka, in January of this year.

Never give up

I am lucky enough to be able to say that I’m still dancing! This would have not been possible without my family and friends to guide and support me through all my difficult choices in life.

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I am delighted to have support from the charity Heart Children which has given me so many opportunities that I would never have managed otherwise. They have even made me a pin-up, by featuring me in their calendar for 2024!

I am a member of the Heart Children Youth Council too, offering a voice to young people with congenital heart disease. This is our chance to speak about any concerns that I and my fellow young people with congenital heart disease may have.

We also advocate for supports for the transition from child to adult services and share learnings from our hospital experiences. My dream is to give back and to one day become a paediatric nurse after I finish my degree in Early Childhood Education and Care.

I am also enjoying my long hair while I still can as my intention is to get out the scissors and chop it all off to raise funds for Heart Children and CHI Crumlin later this year. It’s just my way of saying thank you for all of the incredible support that I have received in ensuring I, and so many others like me, have the best possible future.

Up until now, I haven’t been able to take long-haul flights due to the risk of having a blood clot or cardiac arrest but now I can and my aim this year is to travel to America and see the Big Apple. If there is one thing that congenital heart disease has taught me, it is to grab life with both hands and to live every moment.

Dubliner Sinéad is a member of Heart Children’s Youth Council. Marking Global Congenital Heart Disease Awareness Month, Heart Children will host its annual “The Beat Goes On” conference for young people and adults with congenital heart disease, along with families, in Dublin, on Saturday, 24 February. Registration is free, visit www.heartchildren.ie.