Rebecca Barrow, 29, and Andrew Drinkwater, 41, live in constant fear of their three-year-old daughter having a typical toddler’s tantrum.
That’s because if little Charlie holds her breath in frustration, she could die.
Charlie, who’s three and a half, is sent into cardiac arrest at least once a week, requiring CPR from her parents.
This is due to 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.
‘Charlie can go into cardiac arrest any time, anywhere,’ Rebecca, who is Charlie’s full-time carer, said.
‘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.
‘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.’
The couple live in a constant state of high-alert, braced for the times that they are unable to revive Charlie and have to call 999.
The toddler, who uses a wheelchair and stops breathing a few times a day, ‘bounces back really quickly’ after each cardiac arrest, but that doesn’t stop her parents worrying.
The parents discovered that their daughter was sick while she was still in the womb.
At the 20-week scan back in 2016, Rebecca and Andrew were told their child had spina bifida, a condition caused when a baby’s spine and spinal cord don’t develop correctly in the womb.
A gap is left in the spine and can result in damage to the nervous system, which, in turn, can cause hydrocephalus – a build-up of fluid on the brain – which can further damage it.
A few weeks later, a special scan revealed that the couple’s unborn child also had hydrocephalus and Chiari malformation.
At 35 weeks, birth was induced and after a 48-hour labour, Charlie arrived, weighing 7lb 5oz.
The baby was whisked away to an incubator and at just three days old had back closure surgery and a shunt fitted to divert excess cerebral spinal fluid away from her brain.
Charlie remained in the incubator for two weeks, then spent a further fortnight under observation before she was allowed to go home.
Just two weeks later, the baby was back in hospital again when her breathing became ‘distressed’.
Doctors were baffled and transferred her to Royal Manchester Children’s Hospital.
Eternally grateful for their ongoing medical support, Rebecca is telling her story to raise awareness of the Royal Manchester Children’s Hospital Charity, which has supported her family since her daughter was born.
‘I just had this gut feeling – like a mother’s instinct – that something terrible was going to happen,’ Rebecca said.
That mother’s instinct was right. Charlie stopped breathing and needed to be resuscitated.
‘That was one of toughest moments of my life – not knowing if my little girl would be okay,’ Rebecca said.
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, the surgery did not work as well as hoped and, within days, Charlie’s oxygen level had dropped to a dangerous low.
Further scans detected fluid blocking the shunt in her brain, which was causing her respiratory issues.
The baby spent the next months in hospital, where doctors worked tirelessly to save her life.
Finally, in December 2017, Charlie was able to come home. But by March 2018 her condition had deteriorated again and the little girl needed another shunt revision, going on to spend the next 18 months in and out of hospital as doctors tried to help with her breathing.
Then in September 2019, she had a second decompression surgery.
‘Charlie’s had 11 operations in total to help her breathe or to relieve her symptoms,’ said Rebecca.
‘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.
Eternally grateful for their ongoing medical support, Rebecca is sharing the family’s story to raise awareness of the Royal Manchester Children’s Hospital Charity, which has supported her family since her daughter was born.
The mum 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.’
The charity has given Rebecca hope for Charlie’s future.
‘We’re hoping one day that Charlie does grow out of these episodes – as they’re usually bought on by a toddler tantrum,’ she said.
‘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.’
Rebecca’s sister Jessica is doing a 50km trek to raise money for the charity. You can donate to the cause through JustGiving.
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