Noah’s Story

When I was 31 weeks pregnant, the doctors detected an irregular heartbeat in my son. We were referred to the fetal medicine doctors and fetal cardiologist, but as no structural problems were found, they told us not to worry, and that hopefully it will have improved by the time he was born.

Noah was born in March 2019, after a routine scan detected that he was in distress: ‘his heart rate was all over the place’. When he was born, he looked perfect. I got to hold him for a peaceful half an hour, then he was whisked away from me, which began the most chaotic and traumatic 6 weeks of my life!

Noah spent some time in the neonatal unit, then the cardiac ward, then eventually to the paediatric intensive care unit after having a diagnosis of long QT, a condition which effects the electrolytes that control heart rhythm, leading to irregular heart rates, which can turn into ventricular tachycardia, and often cardiac arrest. At that time, I had no idea of the condition and how it would affect him! We were told we needed to go to Bristol and have a pacemaker fitted asap! We were transferred to Bristol and Noah was fitted with a pacemaker at 7 days old! He looked so tiny and his pacemaker so visible. At that time, it was so hard to imagine he’d be playing with his toys right now! We spent a considerable amount of time in hospital after the surgery, as the medication he was given to suppress life threatening heart rhythms wasn’t working as they’d like. Eventually, we were sent home, but we weren’t 100% safe. At any time, Noah could go into sudden cardiac arrest and suffer sudden cardiac death. What we needed was a defibrillator, which would increase his chances of survival, should anything happen. The problem was with the long hospital stay which also resulted in my husband losing his job we were unable to buy one.

The Leon Heart Fund allowed us to sleep at night, after gifting us a defibrillator, and allowed us to recoup some of the expenses of staying in hospital. If we ever have to use that defibrillator, which I hope we won’t, Leon’s legacy will have saved my son’s life! I’ll never be able to express my gratitude enough!

Noah’s mum, Katy.