Edward's Story
Edward David Nash was born with AVSD (Atrioventricular septal defect). This condition had been picked up prenatally, so we knew what was to come. Edward often had cold hands and feet and a very pale complexion due to poorly oxygenated blood. He would also struggle to feed, becoming breathless and tired. At four and a half months old, Edward was admitted to the Royal Brompton Hospital Children’s Cardiac Unit for his planned heart surgery.
Daisy’s Story
Daisy was born in September, weighing a very healthy 8lbs 4. Everything was fine for the first three months, then on New Year’s Eve, she was diagnosed with hip dysplasia and fitted with a hip harness for four months. This seemed to solve the problem, but soon after, we noticed she had very poor muscle tone and wasn’t doing the things a typical 4-5 month old should be doing, like holding her head up, and she was very floppy.
Isabel’s Story
I was 30 weeks pregnant when I discovered our baby was going to need heart surgery following her diagnosis of Coarctation of the Aorta, as well as a VSD (Ventricular Septal Defect) and three ASDs (Atrial Septal Defects). Our world fell apart; we had never even heard of these conditions before, and I felt terrified.
Harminder and Jessica’s Story
Harmy, now 17 years old, was just three when she had her first seizure, during which her lips turned blue, and her heart stopped. After months of continuous seizures, despite all tests for epilepsy returning negative, GPs and consultants who saw her failed to diagnose her.
Katie's Story
Katie was referred to the Royal Brompton Hospital Children’s Cardiac Unit by her local hospital when she had a severe episode during her swimming lesson. She became very distressed and started sinking into the water as she had no control over herself.
Leo’s story
Mum Lucy wrote Leo's story. On the 26th of December 2016, we sat in the NICU's parents' room at the Norfolk and Norwich University Hospital, waiting to hear what was wrong with our poor, perfect, 9-day-old baby boy. Leo seemed to have a slight cough on Christmas day and started to struggle with his breathing on boxing day, so we called 111…
Blake's Story
Blake was born after a normal pregnancy, but we had to go back a second time after the 20-week scan as they couldn’t measure his heart properly. Looking back and knowing what we know now, this should have rung some alarm bells! At the 24-hour paediatric check, a heart murmur was detected …
Rory's Story
When Rory was born, we knew he had Coarctation of the Aorta and would be taken straight to the Brompton for immediate heart surgery. But when the CATS team tried to pass an NG tube, it just coiled, and we discovered he also had a Trachea-Oesophageal Fistula (TOF) and Atresia. This means that his oesophagus was attached to his trachea, not to his stomach…
Jack’s story
Our gorgeous Jack was born three weeks early but a healthy 6lb 6oz. He was an apparently normal baby, and we proudly got on with life as a family of four. But then Jack started having lots of chest infections and blue spells, and it was just by chance when at the age of 9 months, we took him to an out-of-hours GP with yet another chest infection; this doctor picked up on a heart murmur…

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