Toddler tantrums are a normal part of growing up – but for three-year-old Charlie Drinkwater, they could prove fatal.
The little girl is sent into cardiac arrest – when the heart stops pumping effectively – if, like other pre-school children, she “throws a wobbly” and holds her breath.
For Charlie, this triggers a potentially deadly sequence of events because of a string of serious health conditions, including Chiari malformation, where brain tissue extends into the spinal canal, creating serious implications for the respiratory system and heart.
Her devoted parents Rebecca Barrow and Andrew Drinkwater live in constant fear that a tantrum could kill her- and have to perform CPR on her at least once a week.
Rebecca, 29, Charlie’s full-time carer, said: “Charlie can go into cardiac arrest anytime, anywhere.
“Usually, it starts with a typical toddler tantrum, where she’ll hold her breath. But, unlike other toddlers, whose brains will kick in and force them to breathe, hers doesn’t.
“Instead, she holds her breath to the point where she’ll go into respiratory or cardiac arrest. If it’s respiratory, she’ll start turning blue and if it’s her heart she’ll go a grey-white colour.”
She added: “As soon as it happens, it’s all systems go. If it’s respiratory we use an Ambu-bag – a self-inflating resuscitator – to pump air into her lungs and bring her round.
“But when it’s a cardiac arrest, we have to perform CPR with chest compressions – which happens around 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 about it too much.”
There are also times when, despite their growing expertise, Rebecca and Andrew, 41, who works in social care, cannot revive Charlie.
Rebecca said: “Sometimes, we do have to call 999. When Charlie comes to afterwards, she bounces back really quickly and I just think, ‘How is she going through all that and then carrying on?’
“She’s so confident and whenever we go back to hospital, she’ll always wave at everyone and be like, ‘Hi, I’ve arrived’. After everything she’s been through, she still has this amazingly happy personality.”
Describing her as a “sassy chatter box,” she says Charlie, who has some intellectual impairment and is “mentally around 18 months old,” has been plagued by problems since her birth on Valentine’s Day 2017.
Ecstatic when they discovered they were expecting a little girl in the summer of 2016, Rebecca and Andrew’s hopes were dashed at 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 foetal 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 7lb 5oz, after a 48-hour labour.
“When she was put on my chest, I felt an immense rush of love,” Rebecca said.
At three days old Charlie had back closure surgery as the spina bifida had caused a gap in her back.
She went home a month later – but after two weeks was back in hospital again – and baffled doctors at Royal Blackburn Hospital could not explain what was causing Charlie’s distress.
She was transferred to Royal Manchester Children’s Hospital where shortly after arriving, she suddenly stopped breathing completely and needed to be resuscitated.
Thankfully, doctors stabilised Charlie, who was taken to the Intensive Care Unit (ICU) and put back on an incubator.
Referred to a neuro specialist, Charlie had a series of brain scans, before doctors decided the best course of action was to perform decompression surgery – to remove bone at the back of her skull and spine to widen the space for her brain stem.
Just 12 weeks old when she had the nine hour operation, sadly, it did not work as well as hoped and, within days, Charlie’s oxygen level had dropped to a dangerously low 30 – compared to a reading of 95 to 100, which is considered normal for a baby.
Further scans detected fluid blocking the shunt in her brain, which was causing her respiratory issues – after which, she spent the next few months in hospital, where doctors worked tirelessly to save her life.
Finally, in December 2017, after almost 10 months in hospital, Charlie finally went home.
But by March 2018, her condition deteriorated again, and she needed another shunt revision – going on to spend the next 18 months in and out of hospital, where doctors tried to help with her breathing.
Then in September 2019, she had a second decompression surgery.
Rebecca said: “Charlie’s had 11 operations in total to help her breathe or to relieve her symptoms.
“And while her breathing improved, she kept having episodes where she would just stop breathing altogether.”
These episodes led to Rebecca and Andrew being trained by hospital staff to perform CPR on Charlie, so they could save her life.
“I try not to think about it too much and just leap into action and do what I have to do,” Rebecca said.
Her sister, Jessica, 31, who works in an opticians, has been taking on a series of often wacky challenges to raise £750 for the Royal Manchester Children’s Hospital Charity to thank the hospital for its support.
Rebecca also wants to emphasise the importance of the charity’s work.
She said: “They do so much for all the children in the hospital – even if it’s just bringing them a balloon to put a smile on their face. They are always there – even if it’s just for a little chat. They are invaluable and the work they do is incredible.”
Fantastic medical support has helped Rebecca to feel positive about her daughter’s future.
She said: “We’re hoping one day that Charlie does grow out of these episodes – as they’re usually bought on by a toddler tantrum.
“If she does, there’s no reasons why she can’t live a wonderful life.
“She’s such a little character and, considering everything she’s been through, she’s so resilient. She’s always smiling and making other people smile – I’m just so proud to be her mum.”
Royal Manchester Children’s Hospital Charity fundraises throughout the year to support the treatment, research and care of young patients treated at the children’s hospital in Oxford Road, Manchester.