Louie’s story

Est. read time: 4-5 minutes.

Parents whose baby son died from a brain tumour have thanked the “living angels” who cared for and supported their family. Louie Moss was just six months old when he passed away in April 2022, having received end-of-life care at the East Anglia’s Children’s Hospice (EACH) base in Milton.

Parents Rob Moss and Molly Woodward, from Peterborough, were supported throughout, along with six-year-old son Eli. The couple have spoken of the “exceptional” care they received and say it gave them a lifeline at an unimaginably tough time.

Louie was born in October 2021 and the tumour was diagnosed after Molly took him for a doctor’s appointment last Valentine’s Day.

“Everything was fine for the first three months of his life but then he picked up a nasty cold,” said Rob, 32.

“He never seemed to fully recover and that’s when we first thought something might be wrong. We tried the usual remedies for colic and teething, on the doctor’s recommendation, but nothing seemed to work. Molly took him to the doctors and then everything happened quickly.

“We were sent to Peterborough City Hospital and then Addenbrooke’s Hospital, in Cambridge. That’s where the tumour was diagnosed. Louie had an operation to remove part of it and everything went well. He started showing signs of recovery and smiling again.

“Then, within a week and a half, everything went downhill again and he regressed from there.

”We were told Louie’s tumour was terminal and then faced the difficult decision to decide whether to try treatment that may have prolonged the time we had with him, but would have been detrimental to his quality of life, or to manage his pain and make him as comfortable as possible, and cherish the moments we had.

“Louie came home for a day but it was so intense for myself and Molly. The medication and tube-feeding was overwhelming, so we got in touch with EACH.”

Rob and Molly, 31, took their baby to the hospice in the middle of the night and say that from that point on, the support they received was invaluable.

“From the moment we set foot through the door, there was a feeling of immense relief,” said Rob.

“We knew he was in the best possible hands and there was support for us, too. The staff couldn’t do enough. Nothing was too much trouble, and the only way I can describe them is as living angels.

“Just having someone to talk to made the world of difference. They arranged a picnic at the hospice so some of our family could come and have one last day with Louie.

“They also arranged something else very special, granting one of Molly’s wishes. One of her hopes was to have a family day at the beach. Unfortunately, that wasn’t possible but the care team brought the beach to the hospice. It was so lovely, very kind and such a beautiful thing.

“They went the extra mile and then even further and we couldn’t have felt more welcome or supported. The standard of care we received was exceptional and, because of that, we’ll have a lifelong affinity with EACH and Milton. That connection will always be there.

“We’ve had the most horrific time but the support we received made all the difference. We wouldn’t have known what we were doing otherwise and I don’t know how we’d have coped.

“I’ve described the hospice as the nicest place you never want to visit. Obviously, no parent wants to go there but, given our circumstances, with a baby receiving end-of-life, we couldn’t have been in a better place.

“We’ll keep in close contact and just knowing that support is there makes such a difference.”

In addition to navigating their own grief, Rob and Molly were also naturally concerned for Eli. Again, they received full support and say the six-year-old enjoyed spending time at the hospice. He particularly loved art therapy sessions and using the games room.

“He only has positive memories, rather than feeling anything negative,” said Rob.

“Molly and myself also received bereavement counselling and it helped so much. We were incredibly grateful for the support when our world was caving in, and, without it, we’d have been lost and lacking direction.

“Just one example of that help was in terms of the way we explained things to Eli. We didn’t know how to phrase it or how honest to be. It’s not the kind of thing you can ask anyone but they were able to give us the very best advice.

“It helped so much and, having lost one son, we wanted to ensure Eli was OK. We wanted to protect him as best we could, while at the same time dealing with and navigating our own grief and they explained that it’s natural and normal to have days when you feel completely lost.

“That care and kindness will stay with us for the rest of our lives. It’s human goodness of the highest order and restores your faith, at a time when it would be easy to get bogged down in negativity.”

Published in January 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.

We knew he was in the best possible hands and there was support for us, too.

Related stories

Amali’s story

Est. read time – 8-9 minutes. Jane Rose-Brown has a treasured tattoo on her arm bearing the sentence ‘I will always be…

Read story

Charlotte’s story

Est. read time – 2-3 minutes. Charlotte Freegard is a spirited ten-year-old who lives life to the full. Fun-loving, chatty and confident,…

Read story

Connie’s story

Est. read time – 4-5 minutes. Spirited, determined and brave. Three words that mum Jane Price would use to describe daughter Connie,…

Read story
Shopping Cart
Scroll to Top