“The time in hospital was a very scary time and the resources that CHSF provide are invaluable.
“CHSF is an amazing resource for children with congenital heart disease and their families!”
Mum Sarah, from Grimsby, said:
“Our local hospital discovered Rowan had a Ventricular septal defect (VSD) at birth before we went home, but we were told it would likely close on its own.
“He was then diagnosed with a condition called Pyloric stenosis, and at nine weeks old was rushed to Sheffield Children’s – needing surgery on his stomach. Before the operation could happen, the anaesthetist needed to review his heart echo (echocardiogram), however our local hospital seemed to have lost the images/report.
“Sheffield decided it would be quicker to carry out their own echo. In doing so, they found that Rowan’s VSD was more complex than was originally discovered, meaning we had to wait for a paediatric cardiologist to come over from Leeds Congenital Heart Unit as that was our local specialist heart centre.
“The Cardiologist that came from Leeds was brilliant. We were unsure as to whether he would have to be transferred to the Leeds Congenital Heart Unit for cardiac surgery, as well as the surgery on his stomach, but after speaking with the cardiologist, we were reassured that it was safe for Rowan to have his surgery in Sheffield, and he did not need immediate surgery on his heart.
“From this point on, Leeds kept a close eye on Rowan’s condition – making sure he was always seen in the joint clinics when they visited our local hospital. For years his condition did not change, however when he was about six, they discovered a change and this then meant he needed surgery to repair the hole in his heart.
“This was done in September 2025, when Rowan was seven years old. The Leeds Congenital Heart Unit was absolutely brilliant from start to finish. The children’s heart ward (Ward L51) was amazing, and the support from CHSF made the whole experience so much easier to handle as parents of a heart warrior.
“The time in hospital was a very scary time and the resources that CHSF provide are invaluable. Parent accommodation was the most important, so we had somewhere to sleep whilst Rowan was in PICU and HDU.
“Getting a Katie Bear teddy, medal and certificate afterwards was something Rowan really cherished and is very proud of.
“Feeling part of a community after the surgery as well is something that I’m grateful for and never expected.
“Rowan still has a leak in his tricuspid valve, and may need more surgery in the future, but hopefully it will be many years before he does. We are forever grateful to Leeds for making sure Rowan was given the correct care!
“CHSF is an amazing resource for children with congenital heart disease and their families!”
Wear red in Feb for the thousands of children in our region like Rowan!
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!
Donate online to our Wear Red Day 2026 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.
Albie’s story
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Bonnie
Bonnie is two years old and was born with Atrial septal defect (ASD) and Ventricular septal defect (VSD) which were surgically repaired in Leeds at age 4 months. She has just celebrated her second heart day on 4th May! Mum Charleigh tells us about Bonnie's CHD journey...
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