'Resilient' toddler with half a heart amazes parents

Florence's parents were told about her condition at her 25-week scan

The parents of a "very resilient" toddler born with half a heart are on a mission to raise awareness of her rare condition.

Florence, who is 20 months old, has hypoplastic left heart syndrome, which means her left ventricle has not developed properly and the heart is unable to pump blood effectively.

Florence, from Hinckley in Leicestershire, had her first open heart surgery when she was just four days old, before going into cardiac arrest.

She suffered a second cardiac arrest four days after her first birthday.

Florence has "the most amazing outlook on life", according to her parents

This second medical episode saw her heart stop for 10 minutes, which Florence's parents, Claire and Tom, say left her with "significant" brain damage.

Tom said: "When she woke up, we realised she couldn’t see. The way I described it to friends and family was that someone had hit the reset button.

"Even her cry sounded like a newborn baby again.

"Slowly but surely, she started to do things a little bit more normally but it has taken nearly another year to get her to where we are now which is a baby who can interact, see and be a bit more normal.

"But she's absolutely delayed, if you look at her friends who are the same age - they're all walking, running around, talking. She's not there yet."

Claire described it as "heartbreaking" taking her daughter for the operation just four days after she was born, but said taking her for her second surgery at six months of age was "harder".

Florence has to have 17 medications in a day, which Claire describes as "overwhelming".

At some point, Florence may need a heart transplant if she is well enough.

Claire says she wants people "to understand that not all disabilities are visible"

Claire and Tom said they had also received "great support" from Little Hearts Matter, a single ventricle heart condition charity.

Claire said the charity provided information that helped her and Tom's families to understand Florence's condition.

The charity also has a Facebook group for parents who are in the same boat.

Claire added: "It's nice to know the thoughts, feelings and experiences we are having are not isolated incidents."

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