James’ story

Est. read time: 4-5 minutes.

A bereaved mum says she looks back with smiles and fondness when reflecting on the care and support her baby son received from East Anglia’s Children’s Hospices (EACH).

James Rawlings suffered severe complications when he was born and died just over two weeks later. He and his family were supported at The Treehouse, in Ipswich.

After being born in 2016, James was transferred to the Norfolk and Norwich University Hospital. He was dependent on a life-support machine and it was there that his family was introduced to EACH.

Jo and husband Jon were then able to bring their newborn son home when he started breathing for himself but, sadly, he died when just 18 days old.

“We didn’t know how much time we were going to have and didn’t know what was going to happen,” said Jo, 40.

“We sat there thinking ‘what do we do now?’ Then we were introduced to EACH and given the opportunity to be transferred to The Treehouse.

“It was a case of taking it minute by minute and we weren’t sure if he was going to make the journey. We arrived in the early hours of the morning and I’ll never forget the moment we first walked in.

“We didn’t have a clue what to expect, having never been in a children’s hospice before. However, it was so different to what I thought and also very different from the hospital.

“We went from a very sterile environment, with lots of alarms and machines bleeping, to a very peaceful setting. James had his own nursery with his own cot and there were nursery rhymes playing.

“He just looked so calm and comfortable and it was unbelievable – such a relaxed and very different environment.”

Despite experiencing a “rollercoaster” of emotions, Jo says she will forever be thankful for the care, support and kindness of the EACH team.

“The staff were, and continue to be, absolutely amazing,” she said.

“There were lots of things to think about, including medication and feeding tubes, but they looked after that side of things. Even in the small hours of the night, they’d creep in with their headtorches and take care of everything, without trying to wake us up.

“They took the worry away and looked after me, too, providing some of the things you take for granted when having a newborn baby. Our family and friends were able to come and visit, we were able to give James his first bath, had a movie night in the sensory room, spent time walking around the beautiful gardens and they even cooked us a Sunday roast!

“We made an amazing memory book and felt like a normal family. EACH gave us that opportunity and it’s something we never, ever thought we’d get. Otherwise we wouldn’t have created such precious memories and I’ll forever be grateful.

“The Treehouse became like a second home because we were looked after so well and made to feel so welcome. It was the first time we’d got to spend proper time with James, without machines and everything going on in the background.

“I can’t find the words to describe how awful that time was, yet the hospice team helped us create memories we wouldn’t have had otherwise. I’ll always be so grateful.”

While at the hospice, Jo and Jon took part in various memory-making exercises, including making handprints with James. With EACH’s support, the family were also able to move back home.

“There were a few scares at that time, including times when his breathing dipped and then picked up again,” said Jo.

“It was a rollercoaster the whole time and one of the nurses nicknamed him ‘Pickle’, because he kept us on our toes. However, despite that, we were able to spend time at home and go for walks to the park and along the seafront at Felixstowe.

“EACH were always there to support us. It was amazing, even though we knew it couldn’t last forever. After James died, we went back to The Treehouse.

“He stayed in a controlled temperature room until his funeral and that was important to me, because James had never been on his own since he was born. EACH helped us organise the funeral and has continued to support us afterwards.

“We still go back and Josh, James’ five-year-old brother, goes to events at The Treehouse. Although he never knew his brother, he feels like he does when he spends time there. It’s like they connect and are close, despite never meeting.

“I have so much to be thankful for – not just for what happened at the time but also with what’s happened since, with counselling and support. Everyone has been absolutely amazing.

“It was like the best hug possible and I can’t thank EACH enough.”

Published in March 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

It was like the best hug possible and I can’t thank EACH enough.

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