Heart warrior Leah was born with a heart defect, but her CHD went undetected until she attended a GP appointment for a cough four years later.
Leah’s mum, Rebecca, tells us about their journey with congenital heart disease so far and how Leah and her family have been helped by CHSF…
Heart mum Rebecca says…
We found out Leah had a sinus venosus ASD in September 2020 when she was 4 years old. She was born with it, but it was a huge shock because we never knew about it until she had a GP appointment for an unrelated cough.
When they listened to Leah’s heart, they heard a murmur and referred her for a heart scan. This confirmed the ASD.
After further appointments for various scans and discussions we got a surgery date for April 2021. The time around the date was surreal but we tried to make it as positive as we could.
Leah’s CHD was found at a GP appointment
Leah in intensive care after her open heart surgery
With Leah being five years old by the time of surgery she was asking lots of questions and was really scared. Children’s Heart Surgery Fund helped so much with the Katie Bear Goes To Hospital book and the Play Therapists were able to help Leah see it all from a child’s point of view.
We were told of the Leeds Congenital Hearts website and the children’s cardiac specialist nurses who have helped us every step of the way. They are always at the end of the phone or email.
Leah went into hospital the day before her operation for her pre-operation tests to be done. She was so brave having her canula put in for her blood test. The staff working that day really helped us get through it.
The next day was Leah’s surgery day. Leah was in theatre for around 6 hours.
When we got the call to say she was out of theatre later that evening her surgeon was happy to say it had been a success.
I visited her in intensive care and despite all the tubes and machines she looked ethereal. We couldn’t believe it.
Leah thankfully started to recover quicker than we ever expected. She had tough days to come after surgery, but she did amazing and thrived.
She moved through high dependency and back onto Ward L51, where she got her Katie Bear (who she adores!).
Leah’s had her first check-ups now and we’re happy she’s doing really well.
She’s back at school and is so happy to have spent some time in the sunshine, playing on the beach and seeing her family and friends.
Leah and her CHSF Katie Bear and certificate, received after her open heart surgery
The support of Children’s Heart Surgery Fund has helped so much from gifts for Leah, to chats and cuppas with me.
We’ll be forever grateful to the nurses, the surgeon/s, doctors, housekeepers, Children’s Heart Surgery Fund…and all the people who helped us.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
More from the blog…
Abdul Mu’eed: Heart Month 2026
"I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey. “There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries...
Vincent: Heart Month 2026
“Everyone was absolutely incredible supporting us through every hurdle - there certainly were a lot! “There is no way we would’ve gotten through it without the Children’s Heart Surgery Fund team."Mum Katie, from Bridlington, said: “When Vincent was 9 days old, we were...
Sienna | Heart Month 2026
From a prenatal diagnosis to multiple life-saving surgeries, this blog shares Sienna’s incredible journey with Hypoplastic right heart syndrome (HRHS) and the care that carried her through. It also highlights the vital support her family received from Children’s Heart...


