We know it’s vitally important to share your journeys with congenital heart disease. Your experiences are both reassuring and educational for other heart families, and provide vital awareness for others.
3-year old Zak’s condition was found by complete coincidence, but they found forever friends in CHSF and Katie Bear during his treatment, as mum Olivia explains:
“When Zak was 15 months old, he had an infected finger. We went backwards and forwards to the GP trialling multiple antibiotics with no luck until eventually he was reluctantly referred to York Hospital’s paediatric department.
“When we got there the usual observations were taken and the nurse turned to us and said ‘Oh I can hear, he has a heart murmur doesn’t he?’ which took us by surprise and we responded with ‘Not that we know of!’
“Fast forward a week and of course the murmur was still there, so we were referred for an echo and 4 months later in June 2023, we headed to York hospital for the appointment that would turn our world upside down.
Zak on Ward L51 with his Katie Bear
“The ultrasound tech said that Zak had a large Ventricular Septal Defect (VSD) and a leaking valve, however the specialist wasn’t going to be in the hospital for us to speak to until the end of July 2023.
“We nervously awaited this appointment and were told that Zak would need to have open heart surgery in the next 6-12 months to close the VSD. Fast forward to 3rd January 2024 and we were on our way to Leeds hospital ahead of the surgery the following morning.
“I remember the day Zak had his surgery like it was yesterday. I remember waiting around for what felt like a lifetime waiting to hear that he was out of surgery and rushing straight to Paediatric Intensive Care (PICU) as soon as we heard.
“Seeing my little boy with so many wires, tubes and drains coming out of him whilst completely unconscious is an image that will never leave my mind.
“At first there were some complications, the first night Zak spent in PICU he actually ended up with a collapsed lung which was so incredibly scary, luckily he made a really quick recovery from that. He moved on to high dependency and was showing great signs of improvement and just as we were getting ready to be discharged, Zak became unwell and ended up with an infection which extended our stay in Leeds.
“The 9 days we spent in hospital were made so much easier by the amazing staff at Leeds Children’s Hospital and CHSF.
“CHSF were brilliant. From beginning to end they supported us throughout Zak’s journey with everything from accommodation to just being a shoulder to cry on.
“What an amazing charity and we are eternally grateful for all the support that was provided before during and after. Katie Bear has become a huge name in our household, ever since Zak received her after his surgery they haven’t been apart, he sleeps with her every night ❤️.”
Wear red in Feb for the thousands of children in our region like Zak!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 Justgiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085
(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
Luca’s Story
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Alfie’s Story
17-year old Alfie’s family found out he had congenital heart disease (CHD) when he was just 2 months old. Following multiple procedures, Alfie is now enjoying life both as a teenager and keen LUFC supporter, as mum Kirsty tells us: “Alfie was only 7 weeks old when we...