Kadyn’s Story

Hi my names Ailsa and this is a little story about my son Kadyn who has Bicuspid aortic valve stenosis.

When I gave birth to Kadyn in 2009 he was a typical baby and I couldn’t have been happier.

Around the age of 1 I noticed he was getting increasingly breathless, his hands were always cold and he was always loaded with the cold. After countless trips to the Dr and getting fobbed off with “oh it’s just viral and possibly asthma” one GP checked his pulse and seemed alarmed. He asked me if I was aware Kadyn had a heart murmur I was shocked as we had never been made aware of this. The GP checked his heart rate and said I had to take Kadyn immediately via ambulance to the children’s hospital.

Panicking I went and after various tests, bloods ECG and echo’s we were taken to a small room with a box of tissues on the table.

A consultant called Dr Knight greeted us and told us Kadyn was suffering from a condition called bicuspid aortic valve stenosis. My world completely crumbled around me I heard him talking but I was in a daze. I heard the words surgery catheters and open heart.

We were given leaflets and assured that Kadyn for now didn’t need any intervention.

 Congenital heart disease affects 1-100 babies born in the UK and is more common than cancer. Kadyn’s condition means his aortic valve (the main valve) is thickened by muscle and causes the heart to work harder and faster than a healthy heart. The surgeons can stretch the valve to preserve this and stop the thickening before ultimately the valve will need completely replaced by a mechanical or pigs valve. This sadly doesn’t grow with the person and therefore surgery will be repeated as and when necessary.

Kadyn leads a normal life he’s very active and is a typical 7yr old. However, our last visit in Dec 2016 our consultant seemed very worried as Kadyn’s stenosis is now classed as severe and it needs intervention.

We were given 2 options of catheterisation where they stretch the valve through a balloon procedure through the groin or open heart. We chose the less invasive procedure however it does pose risks.

As a mum my mind is completely blown by all of this there’s not a minute of the day I don’t worry about him. I’m terrified of this imminent surgery I fear for his life and what the future brings.

 All I know is CHD is real it’s horrible and it is nasty. However, it is always being advanced and the surgeons are angels. I fully trust my son’s consultant and I trust him literally with Kadyn’s life.