Mother and father have to give CPR to daughter during cardiac arrest

A toddler tantrum could kill my daughter: Mother is forced to give her three-year-old life-saving CPR on a ‘weekly’ basis due to a rare condition that can cause cardiac arrest when she holds her breath

  • Rebecca Barrow and Andrew Drinkwater, from Darwin, share daughter Charlie
  • She has Chiari malformation, where brain tissue extends into spinal canal
  • The condition creates serious implications for the respiratory system and heart 
  • Couple are forced to perform CPR on the three-year-old at least once a week   

A mother has revealed she is forced to  give her three-year-old daughter life-saving CPR on a ‘weekly’ basis due to a rare condition that can cause cardiac arrest when she holds her breath.

Rebecca Barrow, 29, and Andrew Drinkwater, 41, from Darwin, Lancashire, were left devastated when their daughter Charlie was born in February 2017 plagued by problems, including spina bifida and a rare condition called Chiari malformation.

The condition means sees Charlie’s brain tissue extends into her spinal canal, creating serious implications for her respiratory system and heart and means her brain does not kick in to tell her to breathe when she holds her breath.

Rebecca who cares for Charlie full-time, explained she and Andrew who works in social care, live on red alert, saying: ‘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.’


Rebecca Barrow, 29, from Darwin, Lancashire,has revealed how she has to give her three-year-old daughter Charlie CPR at least once a week because of a brain condition which makes her stop breathing (pictured left and right)

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, sadly, Rebecca and Andrew were devastated to discover at their 20-week scan at Royal Blackburn Hospital that Charlie had spina bifida – a serious condition caused when a baby’s spine and spinal cord do not develop properly 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.

Rebecca revealed: ‘I have epilepsy and my research revealed that my medication could increase the chances of a baby getting spina bifida.’ 

Charlie has a string of serious health conditions including Chiari malformation, where her brain tissue extends into the spinal canal, creating serious implications for the respiratory system and heart ( Pictured: The little girl during one of her many stays at Royal Manchester Children’s Hospital)

‘But the odds are still very low, and, in Charlie’s case, our doctors could never say, for sure, what caused it.’

A few weeks after the bombshell news, a special foetal scan at Saint Mary’s Hospital, Manchester, confirmed that their unborn baby also had hydrocephalus and Chiari malformation.

‘We were absolutely devastated,’ said Rebecca, whose doctors decided at 35 weeks that it was safest to induce her.

She was admitted to Saint Mary’s Hospital two days later and endured a 48-hour labour before Charlie arrived weighing 7lb 5oz.

Rebecca and her husband Andy were devastated when their daughter was born with a range of health issues including the rare condition

Yet she revealed: ‘When she was put on my chest, I felt an immense rush of love.’

Only permitted a moment to bond, Charlie was then whisked away to an incubator.

At three days old Charlie had back closure surgery because the spina bifida had caused a gap in her back.

She also had a shunt fitted – a flexible plastic tube, which is inserted into the brain or spinal cord to divert excess cerebral spinal fluid (CSF) away from the brain.

Charlie remained in the incubator for two weeks, then spent a further fortnight under observation before she was allowed to go home.

After she was born, Charlie only had a moment to bond with her mother before being whisked away to an incubator (Pictured: The mother and daughter after the birth)

At three days old Charlie had back closure surgery as the spina bifida had caused a gap in her back. She also had a shunt fitted – a flexible plastic tube, which is inserted into the brain or spinal cord to divert excess cerebral spinal fluid (CSF) away from the brain

But sadly, just two weeks later, the baby was back in hospital again, with Rebecca revealing:  ‘Her breathing started to get worse. It was really heavy, and she sounded very distressed.’

WHAT IS SPINA BIFIDA? 

Spina bifida is a fault in the development of the spine and spinal cord that leaves a gap in the spine.

About 1,500 babies are born with spina bifida each year in the US, according to the CDC. In the UK, approximately one in 1,000 babies are born with the condition.

Most cases are detected before birth, at the 20-week scan.

The most serious form of the disease is called myelomeningocele. In myelomeningocele, the spinal column remains open along the bones making up the spine.

The membranes and spinal cord push out to create a sac in the baby’s back.

This sometimes leaves the nervous system vulnerable to infections that may be fatal.

In most cases surgery is carried out to close the gap in the spine after birth.

But damage to the nervous system will usually already have taken place, resulting in:

Most babies with myelomeningocele will also develop hydrocephalus, with excess cerebrospinal fluid (CSF) pooling inside the brain.

This is caused by a malformation at the base of the skull in which the lower parts of the brain are pushed down towards the spinal cord.

Babies with hydrocephalus are fitted with a shunt after birth to divert the fluid from the brain, so reducing the risk of increasing cranial pressure, into the abdominal cavity. 

And when baffled doctors at Royal Blackburn Hospital could not explain what was causing Charlie’s distress, she was transferred to Royal Manchester Children’s Hospital.

Rebecca said: ‘I just had this gut feeling – like a mother’s instinct – that something terrible was going to happen.’

Sadly, shortly after arriving in Manchester, Charlie suddenly stopped breathing completely and needed to be resuscitated.

Thankfully, doctors stabilised the baby, who was taken to the Intensive Care Unit (ICU) and put back on an incubator.

Rebecca revealed: ‘That was one of toughest moments of my life – not knowing if my little girl would be okay.’

After being referred to a neuro specialist, Charlie had a series of brain scans, with doctors deciding 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.

Within days, Charlie’s oxygen level had dropped to a dangerously low 30 – compared to the reading of 95 to 100, which is considered normal for a baby, and she was returned to ICU.

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.

Rebecca said: ‘She had three shunt revisions and then her breathing improved again.’

Finally, in December 2017, after almost 10 months in hospital, Charlie finally went home.

‘It was absolutely amazing to be at home for Christmas as a family,’ Rebecca said.

But by March 2018, her condition deteriorated again, and she needed another shunt revision.

She went 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.

‘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.

Rebecca said: ‘I try not to think about it too much and just leap into action and do what I have to do.’

She was on the phone to her sister, Jessica, 31, who works in an opticians, during an episode in January – which had a profound effect on her sibling.

Charlie has since been in and out of intensive care with Rebecca revealing it is ‘terrifying’ having to perform CPR on her daughter  

Rebecca said: ‘My sister lives in Somerset, so we don’t get to see each other as often as we’d like and spend a lot of time chatting on the phone.

‘That day, we were on the phone when, suddenly, Charlie went into cardiac arrest. I didn’t have time to hang up and had to perform CPR while I was on the phone.

‘Jessica knew how awful it was, but to hear it and not be able to see it, or know if Charlie was okay, really affected her.’

The family are constantly prepared to leap into action and save their daughter’s life.

Rebecca said that despite her health conditions, Charlie is a playful and joyful little girl with a lovely personality (pictured with Andrew) 

Rebecca 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.

The couple live on red-alert in case their daughter goes into cardiac arrest with Rebecca revealing they are constantly prepared to give chest compressions 

‘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.’

There are also times when, despite their growing expertise, her parents cannot revive Charlie, who uses a wheelchair and stops breathing a few times a day.

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?”

 The mother-of-one added that despite ‘everything she’s been through’, Charlie  still has this amazingly happy personality’

Since Rebecca’s sister Jessica, 31, heard the mother having to give Charlie CPR during a phone call, the caring sibling has been taking on a serious of often wacky challenges to raise £750 for the Royal Manchester Children’s Hospital Charity (pictured, Jessica with Charlie)

‘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.’  

Since then, Jessica has been taking on a serious of often wacky challenges to raise £750 for the Royal Manchester Children’s Hospital Charity.

Rebecca said: ‘She was planning on doing a 50km trek – but when lockdown happened, those plans were put on hold.

‘Instead, she’s done two mini challenges – one where she balanced 27 slices of cheese on her face for as long as possible and another, where she spent 27 minutes in a paddling pool filled with tuna, tomatoes, egg, avocado, milk and honey!

One of the wackier challenges Jessica has undertaken saw her balance 27 slices of cheese on her face for as long as possible

‘She’s already raised £760, but now she’s planning to go on a camping trip next year where she will do the 50km trek.’

Rebecca added: ‘I think what she’s doing is brilliant and I’d love to see her try and camp, because she’s definitely not the outdoors type!’

Rebecca also wants to emphasise the importance of the charity’s work, revealing:  ‘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, as she revealed: ‘We’re hoping one day that Charlie does grow out of these episodes – as they’re usually bought on by a toddler tantrum.’

In another wacky challenge, Jessica spent 27 minutes in a paddling pool filled with tuna, tomatoes, egg, avocado, milk and honey

‘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.’ 

To sponsor Jessica visit JustGiving.  

WHAT IS CHIARI MALFORMATION?

Chiari malformation occurs when the brain tissue extends into the spinal canal. This can happen if the skull is abnormally small or misshapen, which presses the brain downwards.

The Brain & Spine Foundation in the UK and the National Institute of Neurological Disorders and Stroke in the US both estimate one in every 1,000 people are born with the condition. 

It may actually be more common due to not all sufferers developing symptoms. 

There are three types of chiari malformation:

Type I – occurs as the skull and brain are growing. Symptoms usually appear in late childhood or early adulthood and include neck pain, poor balance, co-ordination difficulties, numbness, dizziness and impaired vision

Type II – is present at birth and related to spina bifida. Occurs when more of the brain tissue extends into the spinal cord than in Type I. Symptoms may include changes in breathing patterns, swallowing problems, arm weakness and quick downward eye movements

Type III – is present at birth and the rarest form of chiari malformation. Occurs when a portion of the lower part of the brain extends through an abnormal opening in the back of the skull. Has a high mortality rate and can cause brain damage

Although not usually considered life-threatening, chiari malformation may be fatal if a patient’s breathing or swallowing is affected.

It can also lead to hydrocephalus – the build-up of cerebral spinal fluid in the brain – which can be deadly if untreated. 

Treatment may not be necessary if symptoms are mild with just regular check-ups and MRI scans being required.

However, surgery can be carried out to remove a small section of bone at the back of the skull. This relieves pressure by giving the brain more room. 

The procedure runs the risk of infections, fluid in the brain and spinal cord leaking. Although the operation helps to relieve symptoms it cannot cure nerve damage that has already occurred. 

Source: Mayo Clinic 

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