Tantrums tantrums are a normal part of growing up, but for three-year-old Charlie Drinkwater, they can be fatal.
The little girl goes into cardiac arrest – when the heart stops pumping properly – when, like other preschoolers, she “wobbles” and holds her breath.
For Charlie, this sets off a potentially deadly sequence of events due to a range of serious health problems, including Chiari malformation, where brain tissue extends into the spinal canal, seriously affecting the respiratory system and heart.
Her devoted parents Rebecca Barrow and Andrew Drinkwater live in constant fear that a tantrum could kill her – and need to resuscitate her at least once a week.
Rebecca, 29, Charlie’s full-time caregiver, said, “Charlie can go into cardiac arrest anytime, anywhere.
“It usually starts with a typical tantrums tantrum, where she holds her breath. But unlike other toddlers, whose brains kick in and force them to breathe, hers doesn’t.
Instead, she holds her breath to the point where she goes into respiratory or cardiac arrest. If it is the respiratory tract it will turn blue and if it is her heart it will turn grayish white. “
She added, “Once it happens, all the systems are ready. If it’s airways, we’ll use an Ambu bag – a self-inflating breathing bag – to pump air into her lungs and get her around.”
“But if it’s cardiac arrest, we have to do CPR with chest compressions – which happens about once a week.
“It can be the most terrifying thing to have your child’s life in your hands, but I try not to think too much about it.”
There are also times when, despite their growing expertise, Rebecca and Andrew, 41, who work in social care, are unable to revive Charlie.
Rebecca said, “Sometimes we have to call 999. When Charlie comes after that, she jumps back very quickly and I just think,” How does she go through all this and then move on? “
“She’s so confident and when we go back to the hospital she’ll always wave to everyone and say,” Hello, I’ve arrived. “After all she’s been through, she still has an incredibly happy personality.”
She describes her as a ‘cheeky chat box’, she says, Charlie, who is mentally challenged and is ‘mentally around 18 months old’, has been plagued with problems since her birth on Valentine’s Day 2017.
Ecstatic to find out they were expecting a little girl in the summer of 2016, Rebecca and Andrew’s hopes were dashed during their 20-week scan at Royal Blackburn Hospital.
They were told their baby had spina bifida – a serious condition caused when a baby’s spine and spinal cord do not develop properly in the womb.
A few weeks after the bombshell news, a special fetal scan at Saint Mary’s Hospital, Manchester, confirmed the devastating news that their unborn baby also had hydrocephalus and Chiari malformation.
Rebecca was induced at 35 weeks and Charlie was born, weighing 7 pounds 5 oz, after 48 hours of labor.
“When she was put on my chest, I felt a huge surge of love,” Rebecca said.
At three days old, Charlie had a back closure operation because the spina bifida had left a hole in her back.
She went home a month later – but she was back in hospital after two weeks – and the bewildered doctors at Royal Blackburn Hospital were unable to explain the cause of Charlie.
She was transferred to Royal Manchester Children’s Hospital where she suddenly stopped breathing and needed resuscitation shortly after her arrival.
Fortunately, doctors stabilized Charlie, who was taken to the Intensive Care Unit (ICU) and placed back on an incubator.
Charlie was referred to a neuro specialist and had a series of brain scans before doctors decided the best course of action was to perform decompression surgery – to remove bone from the back of her skull and spine to increase the space for her brain stem .
Only 12 weeks old when she had the nine-hour surgery, unfortunately it didn’t work as well as hoped and within days Charlie’s oxygen level had dropped to a dangerously low 30 – compared to a value of 95 to 100, which is considered normal for a baby.
Further scans found fluid blocked the shunt in her brain, causing her breathing problems – then she spent the following months in the hospital, where doctors worked tirelessly to save her life.
Finally, in December 2017, after nearly 10 months in the hospital, Charlie finally went home.
But by March 2018, her condition worsened again and she needed another shunt revision – and she spent the next 18 months in and out of the hospital, where doctors tried to help with her breathing.
She underwent a second decompression surgery in September 2019.
Rebecca said, “Charlie has had a total of 11 surgeries to help her breathe or relieve her symptoms.
“And as her breathing improved, she kept having episodes where she just stopped breathing altogether.”
These episodes led to Rebecca and Andrew being trained by hospital staff to resuscitate Charlie so they could save her life.
“I try not to think about it too much and just take action and do what I have to do,” Rebecca said.
Her sister, Jessica, 31, who works at an optician, has taken on a series of often crazy challenges to raise £ 750 for the Royal Manchester Children’s Hospital Charity to thank the hospital for its support.
Rebecca also wants to emphasize the importance of the cause.
She said: “They do so much for all the children in the hospital – even if it’s just a balloon for them to put a smile on their face. They are always there – even if it’s just for a chat. invaluable and the work they do is incredible. “
Fantastic medical support has helped Rebecca feel positive about her daughter’s future.
She said, “We hope Charlie grows out of these episodes one day – because they are usually bought by a toddler’s tantrum.
“If she does, there’s no reason she can’t live a great life.
“She’s such a small character and given everything she’s been through, she’s so resilient. She’s always smiling and making other people laugh – I’m just so proud to be her mom.”
Royal Manchester Children’s Hospital Charity fundraising year-round to support the treatment, examination and care of young patients treated at the Children’s Hospital in Oxford Road, Manchester.