NHS Sleepsuit update + Charlie Drinkwater’s Story

Last year, as the Coronavirus pandemic took hold, we relaunched our Rainbow Embroidered Baby Sleepsuit to raise money for the Manchester Foundation Trust Charity which works to support NHS hospitals in the Manchester & Trafford area, including the Royal Manchester Children’s Hospital – the largest and busiest children’s hospital in the UK. All profits from the sale of this special sleepsuit have been going to this hugely important cause, and we’re so excited to share with you that you – our amazing customers – have helped raise over £20,000 for the Charity. So, from the bottom of our hearts, THANK YOU to everyone who has purchased the Rainbow Sleepsuit.

In order for you to see just where these donations go, the Manchester Foundation Trust Charity has shared with us Charlotte (Charlie) Drinkwater’s story – a little girl who has already undergone 11 surgeries in her short 4 years. (Please note all photos were taken pre-pandemic)

Manchester Foundation Trust Charity funds treatment, research and care projects across 10 Manchester and Trafford hospitals and is the Charity behind the largest NHS Trust in the country. One of the hospitals they fundraise for is Royal Manchester Children’s Hospital, which sees more than 280,000 young patients through their doors every year. Some of these patients sometimes have numerous stays in hospital due to complicated medical conditions. The money raised by the Charity enables them to improve the medical equipment, fund research projects to improve patient outcomes and enhance the environments these children are treated in.

Charlie Drinkwater - all smiles at Royal Manchester Children's Hospital (2018)

One such repeat patient is four-year-old Charlotte (Charlie) Drinkwater. Charlie has a combination of complicated medical conditions and has already undergone 11 surgeries in her life.

 

The combination of symptoms she suffers from means she often stops breathing. About once a week, she’ll suffer a more serious attack and go into cardiac arrest. Her parents Becci Barrow and Andrew Drinkwater are always alert and ready to drop everything at a moment’s notice to perform life-saving CPR on their child.

 

But despite the trauma her little body goes through on a regular basis, Charlie is a cheeky, smiley young girl and loves nothing more than playing with mummy, daddy and her pet chinchilla Chilli at the family’s home in Darwen, Lancashire.

Giggling with Mummy and Daddy on the Paediatric Intensive Care Unit (2017)

“She’ll go into respiratory or cardiac arrest and suddenly it’s all systems go,” Becci told the Charity. “When it’s respiratory we use what’s called an Ambu-bag to pump air into her lungs and bring her round. But 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 instinctively know now when it’s going to be a 999 call and we get the paramedics out.

 

“If she has a tantrum, she often breath holds and because of the neurological makeup of her brain, her breathing instinct doesn’t kick in like it should, so she goes into respiratory arrest. These can happen a number of times a day but the CPR is probably once every week or two.

 

“When she comes around afterwards, she bounces back quite quickly and is back to normal. And you just think ‘how is she going through all that and then carrying on?’”

 

Charlie’s upbeat attitude and the support she has received from her medical teams are the inspiration behind the family’s fundraising for Royal Manchester Children’s Hospital Charity, which is part of Manchester Foundation Trust Charity’s family.

Covered in paint with play specialist Kate Weston (2018)

Last summer, Charlie’s auntie Jessica Barrow, who lives in Somerset, took part in whacky challenges to support the Charity – including taking a bath in stinky food and a sponsored celebrity impressions day. Jessica completed her challenges throughout summer 2020 and raised more than £500 in Charlie’s honour.

 

“Staff at Royal Manchester Children’s Hospital are like family to us,” said Becci. “Some of the wards feel like a second home and they all know Charlie when she’s in.”

Charlie on the high dependency unit (HDU) at Royal Manchester Children's Hospital (2019)
With ward manager Denise Bennett in the Royal Manchester Children's Hospital garden (2017)

Charlie has been diagnosed with; spina bifida, hydrocephalus, Chiari malformation, syringomyelia, neuropathic bladder, neuropathic bowel and global developmental delay. In 2019 she was also diagnosed with growth hormone deficiency.

 

When she was born on Valentine’s Day in February 2017, having been diagnosed with spina bifida while still in the womb, Charlie spent just four weeks in hospital before being discharged home. But sadly, Charlie was back on the wards within a fortnight when she started to suffer from respiratory distress. She then spent a period of almost ten months in Royal Manchester Children’s Hospital and was home in time for Christmas 2017, before another long stay in March 2018.

 

“She has had 11 surgeries in total,” said Becci. “The conditions she has mainly affect her respiratory system but she’s had surgeries for a spinal closure, a brain decompression, three shunt revisions...it’s a long and complicated list.

 

“Her last surgery was in September 2019 and she ended up staying two months in Royal Manchester Children’s Hospital – it seems she doesn’t do short stays!”

Attached to tubes and monitors at Royal Manchester Children's Hospital HDU (2019)

Like many families with a poorly child, Becci and Andrew have battled a lot of stressful situations and near misses with Charlie. But to their family and friends they often make light of things and don’t like to worry them with too much detail.

 

Becci’s sister Jessica admits she didn’t fully appreciate the severity of one of Charlie’s cardiac arrests until she heard one for herself. Chatting on the phone in 2020, Charlie went into an arrest and the severity of what was happening to her young niece hit home to Jessica.

 

Jessica said: “Becci makes light of it to protect us I think. But hearing Charlie collapse and being powerless to do anything when I’m more than 200 miles away just really hammered home to me how important the hospital is to Charlie.

 

“I went up to Royal Manchester Children’s Hospital before lockdown and I was able to surprise Charlie and Becci. Seeing the hospital for myself really emphasised to me all the wonderful work they do. That’s why I decided to do the fundraising.

 

“I was able to do so many challenges because I was furloughed.”

 

With auntie Jessica Barrows (2018)

Speaking of her sister’s amazing fundraising, Becci said: “We’re all very proud of her and know firsthand 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.”

Charlie with RMCH staff members and Manchester United during a visit (2018)

Royal Manchester Children’s Hospital Charity is part of a team of hospital charities under the umbrella name of Manchester Foundation Trust Charity and Charlie’s story is just one of the many patients, whose experience of the hospital has been improved thanks to Charitable funds.

 

Becky Griffiths, the Charity’s Corporate Fundraising Executive, said: “The donation from JoJo Maman Bébé has been so generous and we can’t thank the team, and of course all the amazing customers, enough for their support.

 

“Everyone who bought the rainbow sleepsuit not only received something beautiful for their baby, they also did something wonderful for other babies, young children and adults who are cared for at our hospitals.”

 

To find out more, visit mftcharity.org.uk

 

BUY THE SLEEPSUIT HERE

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