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.
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