Children's Heart Surgery Fund

Based at the Leeds General Infirmary, CHSF covers the regions of Yorkshire, Humberside and North Lincolnshire. Around 400 children from these regions need open heart surgery every year. We aim to ensure these children have the best possible chance of survival and to help their families in whatever way needed during their stay in hospital.

Thanks to your donations, CHSF are able to provide life-saving medical equipment and staffing for this care network, and a suite of Leeds-based services including a holistic family support service, parent accommodation at the hospital and essential ward resources.

LUCA’S STORY

We found out that something wasn’t quite right when we attended our 12 week scan. After an appointment with the fetal medicine and congenital cardiology teams at LGI, we were told that our baby had a ventricular septal defect (hole in the lower chambers of the heart) and coarctation of the aorta and would need open heart surgery, shortly after birth.

When Luca was born, he was taken straight to the neonatal ward at LGI where he was put on medication and monitored closely. He was postnatally diagnosed with a hypoplastic aortic arch, multiple VSDs (1 large muscular VSD and additional anterior muscular VSDs) and small secundum atrial septal defects. At 1 week old, Luca underwent open heart surgery.

After eight agonizing hours, we received a phone call to say that the surgery had gone well, they had managed to close Luca’s chest. This was amazing news as we were told to plan for it still being open and him needing a second surgery to close it after the swelling of his heart had gone down. We were also informed to prepare ourselves to see him for the first time, as he was still on a ventilator and connected to multiple machines. I just remember seeing him and being so grateful that he was still alive.

Luca spent the following 10 days on PICU (Paediatric Intensive Care Unit) at LGI, where he had ups and downs. He was extubated 2 days post surgery but was struggling to breath on his own, he was put on a BiPap machine to help. He then moved to the high dependency unit for 2 nights and finally onto the children’s cardiac surgery ward where we were able to sleep by his side for the first time since he was born.

Our little heart warrior had to have a key hole procedure in November 2024, we will find out if that has been successful at his next follow up appointment in February this year. He is such a happy boy and thriving, we cannot thank the staff at LGI and the CHSF enough for saving our boy!