I was born with a congenital heart defect in 2003. Two days after birth, she developed jaundice and was taken to the Neonatal Intensive Care Unit in Coombe, where a heart murmur was detected.

I was referred to CHI Crumlin for further testing. Here they say I have a bicuspid aortic valve (the aortic valve has only two cusps, or flaps, instead of three), an aortic root dilatation (when the first part of the aorta where the aortic valve resides is dilated) ) was discovered. enlargement), aortic stenosis (when the aortic valve becomes narrower and blood cannot flow through it normally).

And so began a regime of hospital appointments every 6-12 months to check on my health and see how my heart was functioning. My condition started to deteriorate and I had to start taking medication to keep my heart stable until the first surgery. This was a keyhole balloon dilatation procedure that widened the bicuspid aortic valve to allow blood to circulate more easily throughout the body.

stay active

I was really lucky to be an Irish dancer from the age of four. This is the only sport I am able to participate in as I am not allowed to participate in contact sports due to the dangers.

Irish dancing has helped me stay healthy and exercise and fitness has minimized the impact on my heart.

It has also given me many great opportunities. I have performed at the World Irish Dance Championships in Dublin, Kerry and Belfast. I have also performed at The Mansion House in Dublin and Disneyland Paris. I don’t think it’s an exaggeration to say that Irish dancing has helped me recover faster from all the procedures I’ve had. I would also like to think that being an Irish dancer with a congenital heart defect has helped inspire others that anything is possible in life.

Sinead loves Irish dancing.

Unfortunately, as my 17th birthday approached, I reached the stage where I needed open heart surgery. Leading up to the surgery, I was very anxious, not knowing what was going to happen and what my future held. I received support from many people, including my family and the hospital. I spoke to the psychologist, cardiac clinical nurse specialist and other staff at Crumlin and expressed my concerns and fears about this surgery. They were the ones who put my mind at ease. However, I was always worried about whether I would survive the surgery.

trust others

I underwent surgery the following day, January 6, 2021. The night before I was so anxious that I couldn’t even go to bed. I sat in the window seat all night. The next morning, I headed to the theater knowing that my life was about to change.

Happily, the open heart surgery was a success! They replaced my valve with a tissue valve (usually made from pig or cow tissue and treated to avoid rejection). It may need to be replaced in the distant future. They also removed an aneurysm from my heart. I spent one night in intensive care and five nights in a pediatric heart center before being discharged from the hospital.

Sinead was with her father Anthony, mother Lisa and brother Anthony at Finstown Castle Hotel.

Since this surgery, I have been transferred to Mater Hospital under the direction of the same doctor. I have an annual appointment to check my heart and overall health. I’ve also achieved some big milestones in my life, including completing my Leaving Cert in 2022, passing my driving test in 2023, and buying my first car, a Ford Ka, in January this year .

Never give up

I’m lucky to say I’m still dancing! None of this would have been possible without my family and friends guiding and supporting me through all of life’s difficult choices.

I am delighted to have the support of the charity Heart Children, which has given me many opportunities that I would never have had otherwise. They even featured me in their 2024 calendar and made me a pinup.

I am also a member of the Heart Children Youth Council, giving a voice to young people with congenital heart disease. This is an opportunity to talk about any concerns that I or my fellow young people with congenital heart disease may have.

We will also advocate for transition support from pediatric to adult services and share what we have learned from our hospital experiences. My dream is to give back and become a pediatric nurse someday after completing my degree in Early Childhood Education and Care.

I’m enjoying my long hair while I still can, as I’m planning on getting out the scissors and chopping it all off to raise money for Heart Children and CHI Crumlin later this year. This is my way of saying thank you for all the amazing support I’ve received to give me and many others like me the best future possible.

Previously I couldn’t take long-haul flights due to the risk of blood clots and cardiac arrest, but now I can and my goal this year is to travel to America and see the Big Apple. If there’s one thing congenital heart disease has taught me, it’s to grab life with both hands and live every moment.

Dubliner Sinéad is a member of the Heart Children Youth Council. In commemoration of World Congenital Heart Disease Awareness Month, Heart Children will hold its annual conference, “The Beat Goes On,” for youth and adults with congenital heart disease and their families on Saturday, February 24th. It will be held in Dublin. Registration is free. Visit www.heartchildren.ie.