FEATURE: Moving story of baby Charlie diagnosed with cystic fibrosis

Andy with Charlie at Sheffield Children's Hospital. Images supplied.
Andy with Charlie at Sheffield Children's Hospital. Images supplied.

The story of a brave young boy with cystic fibrosis is being shared by his mum to raise awareness of the charity that helped their family.

Jane Powell and her partner Andy Aitchison were left ‘terrified’ when their newborn son Charlie started vomiting green bile and was told he would need emergency treatment at Sheffield Children’s Hospital.

Brave Charlie underwent several operations. Image supplied.

Brave Charlie underwent several operations. Image supplied.

“We were terrified,” said Jane. “Sobbing, we repacked the small overnight bag we had with us at the hospital for the journey ahead. We had no idea these would be the only possessions we would have with us for the next month, but we were in such a rush to be with Charlie there was no time to go home.”

The family say they were ‘disorientated and exhausted’ when they arrived at the hospital. An X-ray revealed Charlie had a blocked bowel and he was taken straight to theatre.

At just two-days-old Charlie underwent life-saving surgery where surgeons created two openings, called stomas, on the surface of his tummy to divert the flow of faeces.

“The next time we saw our baby he was wired up to several different monitors with tubes in and out of his tiny body,” said Jane. “I was also in a lot of physical pain and a nurse diagnosed me with a cellulitis infection around the caesarean scar.”

Jane and Andy with baby Charlie. Image supplied.

Jane and Andy with baby Charlie. Image supplied.

Three days after Charlie was admitted, the couple were offered a place to stay at Treetop House, run by The Sick Children’s Trust - which provides accommodation for parents with children in hospital.

“It was amazing, and was on the top floor of the hospital - just a lift ride away from our baby,” said Jane.

“With all the uncertainty at that time, Treetop House was our saviour. Importantly, it gave me a comfortable and private room where I could express milk, which made a huge difference.

“We hadn’t been home since Charlie was transferred to Sheffield, so we only had the clothes we were wearing, night clothes and one change of underwear. Luckily, Treetop House had laundry facilities. Life gets turned upside down when your child is ill.”

All smiles - Andy and Charlie. Image supplied.

All smiles - Andy and Charlie. Image supplied.

In the weeks that followed, doctors carried out various tests on Charlie to try to determine what was wrong with him, eventually confirming his cystic fibrosis by a sweat test.

Jane added: “It was a terrible time for Andy and I. CF is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections and the hardest thing for any parent to ever hear - premature death.”

“Being at Treetop House meant we could be hands-on and involved in his treatment plan right from the start because we were always on site. This definitely helped us to get him home sooner because we quickly became confident around his stoma care and administering his medication, as well as learning how to detect problems and what to do if symptoms began to show. We were taught physio and met with a dietician. The daily five-hour round trip between the hospital and home would have made this education take much longer.”

Jane and Andy finally got to take Charlie home when he was a month-old.

Charlie, now aged two, enjoying a day out. Image supplied.

Charlie, now aged two, enjoying a day out. Image supplied.

Charlie, who recently celebrated his second birthday, now has a monthly appointment at Sheffield Children’s Hospital, but has also been admitted to the hospital on two further occasions. Fortunately for Jane and Andy, The Sick Children’s Trust were again able to provide them with a room to stay in.

The Sick Children’s Trust runs 10 ‘Homes from Home’ across the country, giving families with seriously ill children free accommodation just minutes from their child’s hospital bedside. The charity relies entirely on voluntary donations and it costs £30 to support a family for one night. Magnolia and Treetop House Manager, Ann Wyatt, said: “It was a very uncertain time for Jane and Andy when they first arrived at Treetop House before Charlie was diagnosed with CF so I am glad we were able to make their lives a little easier and give them a ‘Home from Home’ so close to their baby.

“The Sick Children’s Trust supports around 4,000 families every year, and there is a growing demand for our ‘Homes from Home’ so it really helps to raise awareness of the work that we do when families, like Charlie’s, are happy to share their experiences.”

“If anyone has a reason to be miserable it is Charlie, but he is a bouncy, bubbly, smiley little boy, who constantly pulls faces and makes everyone laugh,” said Jane. “He has gone through more than most people will ever endure and I want to make sure his life is an incredible journey.”

She concluded: “Andy and I know that because of his condition there will be times when we are going to have to say no to keep him safe, but we are committed to always finding Charlie an alternative and are very hopeful for future developments in medical research.”

For more on The Sick Children’s Trust visit the charity’s website.