Danielle’s Story

Eighteen year old Danielle shares her story of living with congenital heart disease (CHD) in order to give hope to parents of babies and young children with CHD.

My journey started when I was a newborn. When I was born, there was no signs of a heart defect but, as time went on, my mom noticed I had a weird “cat like” cry. I was always restless or not moving at all and my skin was blue. She took me to a specialist who told her I have a congenital heart defect called Tetralogy of Fallot (TOF).

This was repaired when I was seven months old, as well as resection of severe sub-aortic stenosis. This was complicated by a complete heart block, causing me to have a permanent pacemaker implanted.

In 2019, I went for my month’s check-up and my cardiologist noticed I was developing mitral stenosis. From 2019-2022, I developed severe symptoms (shortness of breath, fatigue, palpitations, swelling of the feet and legs and more).

On the 12th March 2023, I received a phone call to say I would have open heart surgery the next day. This left me with no time to prepare, but in some way I was so ready for this operation. The surgeons tried their best to repair the mitral valve, but I ended up receiving a mechanical valve. I am now so grateful for this, because I can breathe better and I have so much more energy than I used to.

I’m sharing my story because I hope, in some way, I can help parents see that there is hope for us children with CHD. I have lived a full 18 years and have had three open heart surgeries so far. I am grateful every day for the surgeons and specialists who have looked after me throughout my whole life.

Find out more about different types of congenital heart defects here.