Leanne Race and Noah Race-Wordsworth

Leanne and her son, Noah were both born with heart defects. Leanne tells us below all about Noah’s condition, his time at the Leeds Congenital Heart Unit and how it compares to her treatment at Killingbeck nearly 30 years ago.

Leanne

My first year of treatment was 1990. I was admitted to Hull Royal Infirmary with a suspected virus, and my CHD condition was later detected. I had heart surgery at Killingbeck in 1992 by Children’s Heart Surgery Fund founder Duncan Walker.

My mum remembers Killingbeck providing her with nearby accommodation as she was a single parent from Hull. She also remembers me returning from the surgery covered in ice cube packs and a special silver blanket.

Mum wasn’t allowed to touch me as it would raise my body temperature. (How technology has developed! I was able to kiss Noah and hold his hand the second he returned from surgery!)

Mum very clearly remembers the ward teaching her how to use all the equipment so that she could hold me – disconnecting and connecting machines. Mum talks about how different the ward was back then, it had lots of space and even areas to play outside.

I am very grateful to the ongoing support of CHSF. When my surgery was finished, I was discharged and had no follow up appointments, but I feel the developments in CHSF to support families has made me feel confident having my son Noah. Because of you, we will get ongoing support throughout his life.

Noah

My son, Noah Race-Wordsworth has congenital heart defects including Hypoplastic Left Heart Syndrome (HLHS), an ASD and VSD. Overall a very complex heart condition. At just one week old we were told to take Noah home for palliative care.

While as a family we were trying to decide a plan, a nurse on Ward 51 noticed a fast heart rate, and a few weeks later Miss Carin van Doorn was attempting surgery.

I say attempting as at the time no one thought it would be successful. They thought Noah was too weak to survive, and the surgery if successful would only buy us time.

Signing the consent form was easy thanks to the team, even though I now quiver when I see one, that first one was a life line. We had nothing to lose.

Luckily, we are now 16 months into the journey. The next piece of surgery is very unclear, we are praying for a dual chamber Glenn procedure but the team are unsure if Noah’s mitral valve is strong enough.

We couldn’t have got through this without Children’s Heart Surgery Fund’s help. You helped fund my accommodation – around three decades after doing the same for my mum. 

Without this I would literally be staying in a chair next to Noah. Hull to Leeds is too far to commute. CHSF also helped with small things that reduced stress, such as bottle warmers.

We still have a long, scary journey ahead – three rounds of surgery left for Noah at least, but we are grateful for each and every day.

For more information about congenital heart defects in babies, children and adults visit leedscongenitalhearts.com