Rare heart procedure on Evelina London's smallest patient

Florence with her family.

Parents, Jenny and Billy, ran the London Landmarks half marathon to raise money for our cardiology team after they treated their baby daughter for a rare congenital heart defect. 

At nine weeks old, Florence was diagnosed with Mixed Mitral Valve Disease. A condition where the heart’s mitral valve doesn’t work properly, and so it restricts the flow of blood and puts a strain on the heart.

Florence had life-saving major heart surgery when she was 13 weeks old to replace her mitral valve – our smallest patient to undergo the procedure.

Dr Aaron Bell, consultant children’s cardiologist at Evelina London, said: “We have specialist teams who are experienced in dealing with complex and rare conditions. We are so pleased to see how well she is doing and are extremely grateful to Jenny and Billy for their fundraising.”

Mum Jenny, 33, said: “When Florence was born she made a strange squeaky noise whenever she breathed, and she wasn’t feeding properly so initially the GP thought it was reflux. When Florence was four weeks old she got Covid and was admitted to our local hospital. One of the doctors who checked her noticed that she had a heart murmur but he didn’t think it was anything serious and I was given a follow up outpatient appointment.

“After she was discharged from hospital I continued to worry as she always seemed uncomfortable and didn’t like being held. A few days after her outpatient appointment she stopped feeding and after two days of barely drinking any milk I took her to our local hospital. The doctors thought she had a hole in her heart. I was completely floored. I didn’t expect it to be that.”

Florence was transferred to our children’s hospital by the South Thames Retrieval Service for specialist care.

Jenny said: “I was in shock when Florence was diagnosed with Mixed Mitral Valve Disease at Evelina London. But after all we had gone through we were also relieved that we finally had an answer to all our questions. The doctors explained that the reason she wasn’t feeding properly was due to a build-up of fluid on her lungs which made feeding hard work and she was exhausted. They said she had chosen to breathe over feeding because she couldn’t do both.”

Florence underwent the six hour operation in September 2021. She spent eight days on Sky Cardiology ward before being discharged back home to finish recovering.

Jenny said: “It was really horrible waiting during Florence’s operation. We were so relieved when the doctors told us it went well. The surgeons could immediately see the benefit of the surgery as soon as she came off the heart bypass machine. It was clear she really needed to have it.

“The surgery has made a huge difference to Florence’s life. She is a very happy bubbly baby now. She is always babbling away and is hitting all of her milestones. She is feeding normally now and back on her bottles which has made life so much easier for us. It’s lovely to see her so content from feeding after all the difficulties she had before.”

Jenny said: “I can’t fault the care at Evelina London. Everyone was so knowledgeable and helpful. The nurses were absolutely brilliant. They knew so much about Florence’s condition and gave us lots of advice. Taking part in the London Landmarks half marathon was our way of saying thank you for all the brilliant care Florence has received at Evelina London.”

You can donate to Jenny and Robert’s fundraiser.