Heart hero Harry had life-saving open heart surgery at Leeds, in October this year.
From Harrogate, mum Shawney tells us a bit more about the brilliant work of the Leeds Congenital Heart Unit and how their family were looked after in CHSF-funded accommodation while Harry was being treated, meaning she could always be a stones-throw away…
Shawney said:
“Harry had his surgery on the 23th October 2023 to close his ventricular septal defect (VSD) and atrial septal defect (ASD).
“Both were detected after a murmur was picked up at birth.
“Harry spent some time in the Paediatric Intensive Care Unit (PICU), followed by HDU (High Dependency Unit) before being moved onto the children’s heart ward (L51).
“He was home after just 7 days.
About Ventricular Septal Defect
About Atrial Septal Defect
“We stayed for three nights in Brotherton Wing. It made it so much easier not having to be away from Harry.”
“We stayed for two nights in a room while Harry was on PICU, then we stayed for three nights in CHSF-funded rooms on the Brotherton Wing.
“It made it so much easier not having to be away from Harry after his surgery, and also meant I could continue to feed Harry myself.
“It would just be a call when he was due, and I could just nip to the ward!
Harry at home after his surgery with his Katie Bear teddy and medal
“Every single person involved in Harry’s care over his stay were truly incredible.
“It was the most terrifying time of our lives but the amazing network of staff and support from other parents made it so much easier!
“We continue to have check-ups but fingers crossed everything is going well! Huge thank you to all involved.
Since our charity was founded in 1988, around 10,000 families have stayed in CHSF-funded accommodation.
13 babies are diagnosed with congenital heart disease in the UK every day. This year alone we have supported double the families that we did in 2022.
We need to raise at least £10,000 every year to fund CHSF accommodation.
Please donate what you can to help us reach our goal and ensure heart families just like Harry’s can #StayAnotherDay.
If you can go the extra mile (so heart parents don’t have to), please consider setting up a regular gift to CHSF to enable more families to #StayAnotherDay throughout the year!
CELEBRATE CHRISTMAS WITH CHSF
Have a festive flutter on the 2023 Christmas Raffle, or maybe you could buy a pack of Xmas cards. Want a challenge? You can Step Into Christmas by walking a marathon in December, or Jingle All the Way to 5K with Team CHSF!
The most wonderful time of the year is almost upon us again. Can you help us be there for heart warriors all year round?
Visit our Christmas page to see more ways you can support CHSF this festive season!
Family Support Update: Inclusion in action
Mansi Dass joined Children’s Heart Surgery Fund as Family Inclusion Worker in late June. Here’s an update from CHSF’s Head of Family Support, Sarah Cherry on how Mansi is dedicating her time to promoting inclusion, celebrating cultures and raising awareness to bridge...
Fundraiser of the month: The Jackson Family in memory of Roxy
In memory of their beautiful daughter Roxy, who passed away in hospital aged just six months old, the Jackson family took on a powerful challenge - a nighttime hike up Mount Snowdon! Surrounded by loved ones, they climbed through the darkness to raise money for four...
Support for families: August 2025
“The ability to listen when you’re going through a hard time. Kindness in providing accommodation and vouchers when your child is in PICU or HDU. Empathising with your emotions and being a friendly face. "The highlight for us was our child receiving a Katie bear and a...
Support for Heart Families on the Neonatal Unit
The neonatal unit (ward L43) cares for babies who need extra help after they are born. This includes babies born with heart disease, and we asked Advanced Neonatal Nurse Practitioner Jenny Naylor to describe how CHSF work with NHS staff to support patient’s families...
Youth Voice: Joseph
"Hello, my name is Joseph, and I am a cardiac child. "I was born with my heart condition and what has really helped me throughout my cardiac journey is music. "At the age of five, I joined Wakefield Cathedral choir - most of the time just staring at the ceiling and...
The jobs market when you’re a ‘first generation’ middle-aged heart patient
"Funny looking pic, isn't it? The above photo is my aorta, mid-operation in 2008, as a truly wonderful team at Leeds General Infirmary battled to save my life. "Not my first heart surgery, but definitely my most dramatic and frightening."I've been involved with all...