Haydn

When mum Nicola took her son Haydn (16) to the GP with what she thought was a chest infection, she never imagined it would lead to a diagnosis of severe congenital heart disease.

After months of tests, an unsuccessful procedure and the news that her son would need open heart surgery, Nicola found herself navigating a year filled with uncertainty, difficult decisions and overwhelming emotions.

Now, as Haydn settles into college just weeks after his operation, Nicola reflects on their journey and the help they received.

I took Haydn to the doctors with what I suspected was a chest infection. It was during this appointment they found a heart murmur and referred us to the hospital, and to have an ECG. (Haydn was 15 at the time)

Months went by when we finally got our appointment. We went in on the Monday with the Paediatric Cardiologist. It was at this appointment we were told two options. Haydn either had a hole in the heart or congenital aortic stenosis.

We came back on the Thursday for an echo, and back again the following day for our results.

The results were severe aortic stenosis and he needed urgent treatment. Haydn had suffered with chest pains and shortness of breath but because these happened slowly over time, he thought this was normal for him and never questioned it.

10 days after diagnosis we were sent to Leeds General Infirmary for him to have the balloon procedure.

We were both completely shocked by the severity of his diagnosis. The guilt I felt for never picking up on this sooner was just awful, but I was also grateful that my ‘mum instinct’ kicked in when I took him to the GP that day.

Haydn came out of surgery, and they came to collect me where I was greeted by the surgeon. They took Haydn back to the ward while I stayed behind – the surgeon wanted to talk to me. The words she spoke will never leave me. “Surgery didn’t go as planned and he lost too much blood and needed resuscitation (chest compressions and adrenaline) for almost a minute before he came back.” We’d had 10 days to get used to and understand his diagnosis – and then I was told this.

The shock and fear broke me, but I stayed strong for my boy who just looked so pale and poorly. The doctors came round, did another echo and told us surgery hadn’t worked that well so we needed to prepare for open heart surgery.

Months of appointments and tests continued, until one day, I received a call to go in that afternoon to speak with the surgeon as they had an appointment for surgery the following week. Off we went to the hospital where, again, we were dealt information upon information.

Haydn was now 16 so it had to be his final decision which type of valve he received. We had less than 24hrs to decide.

Haydn very bravely made the decision to go ahead with surgery and chose the Ross procedure.

I had days to put things in place – for my other three children, work etc. Off we went on Tuesday evening to the hospital, ready for surgery the following day. Walking away from my boy that night totally broke me.

I was back by his side by 6:30am the next morning. He went down for surgery at 8:30am. I got a call from the surgeon at 4:45pm saying everything went to plan and he was now in intensive care. I went straight up to see him, but they were struggling to settle him and his blood pressure.

An hour later the nurses came to get me and I sat by his side, stroking his hand and talking to him. Breathing tube in and wires everywhere – but as scary as it looked it reassured me that they were taking excellent care of him.

As a single parent, off I went home to give my other three children an extra tight squeeze.

By 11pm they had brought him round, removed his breathing tube and I was able to speak to him on the phone if I wanted. After a year of emotions and a day of fear and the unknown, I couldn’t do it without crying so chose not to speak to him – as the last thing he needed was for me to crumble.

His twin brother and I went back first thing on Friday morning to find him sat up in the chair chattering away. By 12pm, he was moved onto the high observation unit. He had a couple of rough days but by day three he was in the wheelchair outside getting some fresh air!

Day seven was home time. His recovery was incredible. He is now 10 weeks post op and has just started college.

To the surgeon, thank you for saving my boy. To the staff on ICU, you are amazing and no amount of words will ever be able to thank you for the night you looked after my boy, and the compassion and care you gave to me when I crumbled. Your reassurance was just what I needed. And to the nurses up on the ward, thank you for taking such good care of Haydn while this mum needed air and when I needed to get back to my other boys at home.

We were also offered so much by Children’s Heart Surgery Fund – from meeting other kids with congenital heart disease and days out, to financial help while we were in hospital.

You are all incredible and I just can’t thank you enough.

Haydn’s story is one of many families we support each year. From providing emotional and practical support to helping families during long hospital stays, Children’s Heart Surgery Fund is there when we are most needed. If you’d like to help more children, young people adults and families facing congenital heart disease, please consider making a donation today.