Feb 22nd 2021 - World-first paediatric heart transplant technique boosts number of life-saving operations for children in the UK

Using a technique that ‘reanimates’ the heart outside of the body, Great Ormond Street Hospital, Royal Papworth Hospital and NHS Blood & Transplant expand the donor pool and perform six paediatric heart transplants in 2020 Great Ormond Street Hospital (GOSH) and Royal Papworth Hospital (RPH) have collaborated to introduce a world-first paediatric heart transplant technique […]

Aug 26th 2020 - Hope’s story

Told by her mother Caroline Hope was born on the 24th January 2020 with Trisomy 21. This brings with it a list of possible medical issues, including heart defects and so she was given many scans at a just a day old. The scans revealed that Hope had a partial ASD and it was left to hopefully […]

Aug 13rd 2020 - Can you help us improve the quality of services for congenital heart disease?

The Children’s Heart Federation are involved in a new study called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. We want to hear your views on what makes services good quality, which includes understanding how COVID-19 has affected your experience of health […]

Jul 21st 2020 - Miley’s story

Told by her mother Natalie We had been waiting for the birth of our daughter Miley for years. We had fertility treatment to help conceive her and we were so excited to meet her. I had no complications in my pregnancy and we were told at the scans that the baby was healthy. However, at […]

Jun 18th 2020 - Feeding toddlers with heart conditions

Children with heart conditions are often reluctant eaters so need to get the most out of everything they eat and drink. This  book is written by paediatric dietician Luise Marino specifically to help with feeding children with medical conditions. It contains recipes and practical advice about feeding a child with a medical condition. If you […]

Jun 15th 2020 - Riley’s story

Told by her mother Chloe. Riley’s condition wasn’t picked up at ante-natal scans or after birth. When she was six and a half weeks old we took her to hospital for the first time because we were concerned about her being sleepy and refusing feeds. It was the end of January 2020. The doctor on […]

Jun 15th 2020 - Sebastian’s story

Told by his mother Julie. My son Sebastian was three months old when doctors discovered he had two holes in his heart. In December 2016 Sebastian had became very ill and after collapsing at home was rushed by ambulance to our local hospital.  He was being treated for bronchiolitis that had developed from a bad […]

Jan 06th 2020 - Harper’s story

Told by her mother Ellie On 24th May 2019, we welcomed our beautiful baby girl Harper Sophie Dottie Hall into the world, weighing a tiny 6 lbs 15 oz she was perfect. We had found out at our 20-week scan in January 2019 that Harper had a congenital heart defect called Tetralogy of Fallot’s but […]

Aug 29th 2018 - Dominic’s story

Told by his mother Fran. The twenty week scan. A chance to see our miraculous second baby, conceived naturally after years of treatment to have our first son. Our excitement soon faded, seeing the colour drain from the sonographer’s face as she told us she couldn’t find the baby’s heart. We then waited with bated […]