Nadine’s Story

Nadine at CHT Coffee morning

Nadine's Wedding Day

Nadine at youth days out

Nadine Graduating Queen's University

Nadine at conference

Tell us a little bit about yourself?

Over 35 years ago, I was born with a complex single ventricle heart. I underwent surgery as a child, routine check ups, hospital stays and many medication changes but now at 35 I live a full life with my special half a heart. 

What has life been like living with CHD? 

I was born in 1988 with a single ventricle heart, I have had two open heart operations and many tests since. When I was growing up with a heart condition at school, I didn’t feel very different from my peers, the only thing was, I didn’t have to do games and instead was able to leave school early on games day!! I loved my school days and participated in school as much as possible. I gained 9 GCSEs,4AS Levels and 3 A levels at school and won the A Level politics cup. Throughout my years at school, I had many check up appointments which always ended in McDonald’s for lunch! As I got older, I would have worn at times a 24hr heart tape. I had a great group of friends who always looked out for me but never treated me differently. 

Alongside school I was also a brownie and then a guide, I also did a lot of youth work in my late teenage years and had a great social life.

I went onto Queens University to complete a degree in English and Theology. I found University a challenging time finding the balance between studies, socialising and resting which resulted in me ending up in hospital and having to complete my degree part time. However, once I felt better I was able to volunteer with Children’s Heartbeat Trust alongside studying and in 2013 I completed my degree, one of my biggest achievements.

In final year, I spent some time in and out of the hospital and I remember Dr Lockhart and the team telling me I may find working full time too much and my response was “ I didn’t go to university to not work full time!” I worked full time until January 2024 when I finally reduced my hours to a 4 day week. I am incredibly thankful that I have had the health to work full time until recently in a job I love in a very busy, fast paced environment. I have finally found the work life, social work and rest balance! 

Since leaving University, I have worked full time, bought my first house, got married, turned 30 and bought our little dog Charlie. 

In recent years I have developed Artial fibrillation and have had to have my heart shocked back into  regular rhythm twice. Since developing this I have become more aware of my need to rest and the result of stress on my heart. In 2023 I spent some time with the clinical psychologist in the RVH helping me to find ways to cope with stress and anxiety I feel around my condition, I find the sessions challenging but incredibly helpful. 

Everyday is not easy both physically and mentally. I do experience a lot of anxiety around my condition, my tiredness will vary each day. I experience palpitations most days, I struggle to walk upstairs and hills and in the winter feel constantly cold but I am grateful for everyday and do not let my heart condition hold me back from life.

What support did you receive from Children’s Heartbeat Trust and what impact did this have?

Children’s Heartbeat Trust have supported, provided and loved me and my family for 35 years. They have always been there when we as a family have needed them most.. providing parent support groups, on site accommodation at the children’s hospital, family days out which gave us the opportunity to meet other families just like us and more recently helped me through my journey of grief, after I lost a friend just like me.

Over the years I have volunteered with Children’s Heartbeat Trust, I have had the privilege to share my story at conferences and Stormont, but my highlight is watching young people who face the same challenges unique to their conditions spending time together and forming friendships. I love seeing the support and love they have for each other. 

This May I will walk 40 Miles in May to say a massive THANK YOU to Children’s Heartbeat Trust. It is because of these experiences and much much more, I will take on this challenge with a grateful heart.

If you’d like to find out more info about the challenge and how you can get involved, click here: https://www.childrensheartbeattrust.org/how-you-can-help/fundraise-for-us/join-our-events/mileaday/