Hinckley: Half-hearted ‘resilient’ child stuns parents

The parents of a ‘highly resilient’ baby born with half a heart are on a mission to raise awareness of his 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 operation when she was just four days old before going into cardiac arrest.

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

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 he woke up we realized he couldn’t see. The way I described it to friends and family was that someone hit the reset button.

“Even her cry sounded like a newborn again.

“Slowly but surely, he started to do things a little more normally, but it took almost another year to get to where we are now, which is a baby who can interact, see and be a little more normal.

“But she’s absolutely late, if you look at her friends who are the same age, they’re all walking, running, talking. She’s not there yet.”

Claire described it as “excruciating” to take her daughter to surgery just four days after she was born, but said it was “harder” to go through with her second operation at six months old.

Florence has to take 17 medications a day, which Claire describes as “overwhelming”.

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

Claire and Tom said they had also received “tremendous support” from Little Hearts Matter, a single ventricle charity.

Claire said the charity provided information which helped her and Tom’s families 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 that the thoughts, feelings and experiences we have are not isolated incidents.”