A mum has revealed that her little girl suffered two cardiac arrests before her first birthday which left her blind and unable to walk or talk.
Claire Bennett was left fearing the worst as her tot’s simple cold turned into a life-threatening nightmare.
Florence, now three, has been dealing with a heart condition since birth and so any illness – no matter how minor – could be detrimental.
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This time around it left the tot entering into cardiac arrest, where she lost oxygen for a full 14 minutes.
And when she woke up, her sight and ability to walk and talk had disappeared completely.
“After all she’d been through, I couldn’t believe that a common cold was going to be the thing that could kill her,” Claire, a full-time carer, from Hinkley, Leicestershire, told Need To Know.
“We were so thankful that doctors were able to keep her alive.
“But we couldn’t imagine the nightmare that would happen next.”
Claire, 37, and her husband, Tom, 41, had been trying to conceive for over five years with no luck.
Then, out-of-the-blue, she got a positive pregnancy test and the pair were overjoyed to welcome their first child.
But during her 20-week scan, she recalls the moment her stomach sank as a doctor was urgently called in and alarm bells started ringing.
She said: “I was all smiles as I listened to my baby’s heartbeat; and then it was all taken away from me in a second.
“It was confirmed that she had three types of a congenital heart condition, though I was told it could be treated when she was six months old.
“I clung onto hope, until my next scan found that her heart wasn’t developing properly and that it was likely the birth wouldn’t continue to full-term.
“I sobbed and sobbed.
“There was no hope, as if she did survive, it would mean emergency life-saving surgery before she even opened her eyes.
“I couldn’t believe I was faced with losing my little girl after we had waited for so long.”
Claire, at 39 weeks pregnant, was rushed in for an emergency caesarean after the baby’s heart rate dropped significantly.
Florence soon arrived and at just four days old, she had open-heart surgery.
A shunt was inserted between the heart and lungs in a bid to let blood bypass the left side of her heart, which was essentially “dead”.
Despite being a success, the newborn later entered into cardiac arrest.
Luckily, the stressful complication hadn’t caused any further issues and so the parents took on the task of learning how to deal with their new normal.
But it wasn’t to last.
She said: “When we finally got discharged and allowed home, it was a huge relief.
“I thought our battle was far from over.
“After five days, though, Flo’s oxygen levels went down.
“Her heart was struggling to cope and she was readmitted back into hospital.”
As she began putting on weight, they were allowed back home when Flo reached six months old, before another operation was underway.
The shunt was removed and the vein in her neck was connected to the pulmonary arteries to help blood flow around the body.
Flo began hitting her milestones, such as talking, and finding a love for the television show, Bluey.
But, just before her first birthday in October 2023, that’s when she suffered the life-changing aforementioned cardiac arrest.
Claire said: “Doctors had reassured us it was just a virus and sent us home with antibiotics.
“But she just didn’t improve.
“Flo was going downhill rapidly.
“When I saw her tiny body after they were able to revive her, I was amazed at how she had defied death once again.
“But as her eyes started vacantly, with her smile gone, I realised she was completely blind.”
Other tests showed that Flo had developed cerebral palsy.
In January 2024 though, the parents found hope as their little girl began reacting to their window cleaner – and, suddenly, her smile reappeared.
It was found that her delayed sight response was due to her brain being unable to process what she was seeing clearly.
After two months, Flo started speaking once again and later began crawling.
While the family has a long way to go, they’re adapting each day.
Now, she has a walker to help strengthen her legs and receiving speech and language therapy through private means.
This summer, Flo will undergo her third – and hopefully final – open-heart surgery.
It’s hoped it’ll complete her circulation and repair her tricuspid valve; one of four – two for the tot – which help blood flow in the right direction.
For now, they’re grateful that their miracle little girl is here and hope to spread awareness by sharing her story.
Claire added: “Life is very different to what we ever imagine it would be having a child.
“I’ve given up work to become a full-time carer, as she’s unable to go to nursery.
“Most weeks are filled with appointments and it sometimes seems never-ending.
“We’re very worried about her future, as I don’t know what it will look like.
“Will she need further surgical interventions? Maybe a heart transplant?
“We’re hoping she’ll be educated in a main stream school, but we’ll see how she goes.
“Flo has taught us what true resilience is.
“She has faced everything with a smile.
“No matter what, we will get back up every time we are knocked down to fight for Florence.
“It’s taught us life is too short.
“If we ever feel like we’re failing as parents, we look at Flor and take her strength as an indicator that we’re doing something right.”
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