Family Stories

There are lots of parents affected by congenital heart disease who want to share their story. Below are just a few:


MarthaGemma, North Wales

Five year-old Martha’s heart defect was detected during mum, Gemma’s, pregnancy. Gemma says, “We know that if Martha’s heart problem had not been detected during our 20 week scan, she would not be here today. Prenatal detection saved Martha’s life. Thanks to the skills of our sonographer we have our beautiful little girl. There are no words to thank her.”

Small HoneyGrace, Devon

Grace’s daughter, Honey, was in heart failure by the time her heart defect was detected at 6 weeks old by the family’s GP. She subsequently went on to have two open heart surgeries at four months old. The first surgery corrected the defects and during the second, a week later, Honey was fitted with a pacemaker due to complications. Honey is now four years old.

square tommyNatasha, East Yorkshire

Natasha’s son Tommy was born in January 2015. Despite passing all his newborn tests, Natasha was sure that something was wrong. He slept all the time and was not gaining weight. Tragically, Tommy passed away at 11 days old from a heart defect that has a 99% success rate if operated on.

Nicola, Glasgow

Nicola’s little boy, Tom, was born with Transposition of the Great Arteries, a heart defect that was detected by a pulse oximetry test before he was discharged from hospital. Nicola says: “I truly believe that the use of the pulse oximeter saved Tom’s life. It terrifies me how differently our story may have turned out if we were allowed home.”

We have many families willing to spread awareness of congenital heart disease (CHD) by sharing their experiences. To find out more about speaking to them, please contact us.