Charlie Drinkwater

Six year-old Charlie is a lifelong patient at Royal Manchester Children’s Hospital and has a combination of complicated medical conditions that mean she often stops breathing and goes into cardiac arrest. Her parents Becci and Andrew have learned to always be ready to perform CPR.

Charlotte “Charlie” Drinkwater has a combination of complicated medical conditions and has undergone numerous surgeries in her life. She has been a patient of Royal Manchester Children’s Hospital since she was a newborn. Here, her mum Becci Barrow shares the family’s story…

“Charlie always keeps us on our toes. I don’t think you can call life “boring” when Charlie is around.”

Always in and out of hospital, by the time she was four years old, Charlie had undergone 11 surgeries. She has been diagnosed with; spina bifida, hydrocephalus, Chiari malformation, syringomyelia, neuropathic bladder, neuropathic bowel, global developmental delay and growth hormone deficiency.

Born on Valentines Day in 2017, having already been diagnosed with spina bifida while still in the womb, she remained in hospital for four weeks before she was discharged. Unfortunately, she was back within the fortnight when she had started to suffer from respiratory distress. This was the beginning of what would be almost ten months as an inpatient at Royal Manchester Children’s Hospital. Charlie made it home for her first Christmas but ended up having another long stay in hospital the following March.

Whilst her conditions mainly affect her respiratory system, Charlie has had surgeries for all sorts – spinal closure, a brain decompression and three shunt revisions. The combination of conditions she suffers from also mean she often stops breathing.

Becci says, “It used to be that about once a week, she’ll suffer a more serious attack and go into cardiac arrest. Thankfully now the serious ones are about once every month and the non-cardiac arrest ones are about once or twice a week which is a huge improvement. Me and her father Andrew are always alert and ready to drop everything to perform CPR.”

Some attacks are worse than others but Becci and Andrew have learned when they can handle it themselves and when they should call for an ambulance.

“When it’s respiratory we use what’s called an Ambu-bag to pump air into her lungs and bring her round. When it’s a cardiac arrest it’s the full CPR with chest compressions. Mostly we can bring her round on our own, but we know when it’s a 999 call.

If she has a tantrum she often breath-holds. Because of the neurological makeup of her brain her breathing instinct doesn’t kick in like it should, so she goes into respiratory arrest.

When she comes around afterwards she bounces back quite quickly and then she’s on doing her normal thing. I sometimes look at her and think ‘how is she going through all that and then just carrying on?’”

Despite what her body goes through so frequently, Becci says you wouldn’t know just looking at her.

“She’s so cheeky and smiley. She loves playing. She loves cuddling our pet chinchilla Chilli. She’s just a normal happy girl.”

Now, aged six, Charlie is as healthy as ever. With lots of help from our neurosurgeons, Charlie has been able to go 12 months without cardiac arrest! Whilst she does continue to require long stays in hospital, Charlie managed to start the 2023 school year on time and even full time!

Charlie and her family are great supporters of our Charity, citing the staff at the hospital being their main inspiration.

Becci says, “We got involved fundraising for Royal Manchester Children’s Hospital Charity because the staff at the hospital are like family to us. Some of the wards feel like a second home and they all know Charlie so well. They’re so supportive and good at looking after not just Charlie, but me and Andrew as well.”

“We know first-hand that every penny donated to Royal Manchester Children’s Hospital Charity will go towards giving children like my daughter a chance not only to survive but thrive and enjoy life to the fullest.”