Theodore’s story

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Est. read time: 7-8 minutes.

By their own admission, bereaved parents Lee Channell and Emie Rayfield would be lost without the “priceless” support of East Anglia’s Children’s Hospices (EACH). The couple’s baby, Theodore, died at the Norfolk and Norwich University Hospital when he was just 71 minutes old, on 22nd July 2021. He was born at 5.25am and passed away at 6.36am.

Afterwards they chose to bring him to The Nook, in Framingham Earl. They drove themselves to spend time together as a family, creating treasured memories supported by staff at the hospice. Little Theodore had exomphalos – a defect of the abdominal wall detected during Emie’s routine 12-week scan, in January 2021.

At that point it was hoped surgery would correct the problem. Instead, more scans revealed further problems, notably the devastating fact he had no kidneys, and Lee and Emie were duly referred to EACH. It meant the couple were able to engage with staff and begin making plans for the inevitable.

“Initially, we were both scared because, obviously, we didn’t want our baby to die,” said Emie, 32. “However, having support helped us control the controllable. (Counsellor) Amy (Brown) came to the hospital that morning and made sure we were able to get to the hospice as soon as possible, which lessened the stress and worry and was invaluable.

“We talked about what might happen and what we wanted to happen. We had choices and decisions and that’s something we were only able to do with the support of EACH. It meant we were able to focus on what was important to us and most appropriate for our family.

“Without that, as dramatic as it sounds, I don’t think I’d be here now. I just wouldn’t have been able to cope without that support.”

First and foremost, the couple, who are sharing their story to mark Baby Loss Awareness Week 2022, knew they wanted to bring Theodore to The Nook. “As soon as it was presented to us as an option, we were adamant it was the right thing to do,” said Emie.

“It helped so much and made a huge difference in terms of creating memories with Theodore. We stayed at the hospice, our parents and siblings were able to visit and it allowed us to do normal things we wouldn’t otherwise have done. We took him for a walk around the hospice grounds, gave him a bath and changed his clothes.

“The hospice was completely different to what I imagined. When I thought about it beforehand, I envisaged misery, sadness and darkness. However, it’s not like that in reality. There’s a lot of love and positivity here.”

Lee, 37, described the support he and his partner received as a “safety net”. “It feels like yesterday but, at the same time, a lifetime ago,” he said.

“The hospice was very different to what I imagined, too. You expect it to be very clinical and obviously it is to an extent, but it also has a homeliness to it. It’s hard to describe and not something you can understand until you’ve experienced something like we have.”

EACH continues to support Lee and Emie, who live in Norwich, and they have fortnightly sessions with counsellor Amy. They attended a special Remembering with Love service for bereaved families just before last Christmas, have been to coffee mornings and son William, 13, enjoyed a sibling event at Norfolk Snowsports Club.

“Seeing Amy helps us massively and it’s really important coming back to somewhere we spent time with Theodore,” said Emie. “As soon as we pull onto the drive, we can see the spot where we took him for a walk. It brings memories flooding back.

“It’s nice meeting other people in a similar situation, too. It makes us feel more normal, like we’re not alone, and it’s the little things that make such a difference. For instance, every bereaved family received a bracelet, engraved with their child’s name on.

“We also have lots of special photos of Theodore, arranged by EACH and the charity Remember My Baby. The photographer was amazing and managed to edit and give us photos to use in time for Theodore’s funeral.

“He then delivered the memory stick in a beautiful gift bag exactly four weeks after taking them, which is when they’re allowed to hand the photos over. In addition, (counsellor) Michelle (Waldie) helped create some beautiful hand and foot casts, a hand and footprint plate, a cup and canvas and several hand and foot imprints for our wider family, including Lee’s two daughters, May and Poppy.

“These things make us think of Theodore. It’s about what they represent and mean to us. These gifts have a real impact and help keep his memory alive.” Emie added: “Amy gave us priceless ideas for memory-making after Theodore passed.

“Without her, so many little things would have been missed or we wouldn’t have felt able to speak up about them. She gave us confidence and strength. At The Nook, Theodore’s room was made very homely, with a lovely personalised name sign on the door, soft toys and books to read to him.

“A lovely cooling cot was set up and ready to go on arrival, which enabled us to spend as much time with him as possible. We were given a helpful folder full of information and ideas for Theodore’s funerals, which was something we’d been too scared to think about or discuss.

“It helped us add personal touches to a very important day that we might not have thought about in such a difficult time. Everyone was totally amazing but (nurse) Anne-Marie (Zmura) also needs a special mention as she looked after us so well the whole time we were at The Nook.

“Nothing was too much for her and her amazing, kind and caring words got us both through those emotional few days. There are so many other things, like the sibling day organised by care staff that William attended at Norfolk Snowsports Club.

“He absolutely loved it and created happy memories, rather than feeling sad about what happened to his little brother. He’s got adults he can talk to but not children his age.

“It’s not something he’d talk about at school, but the sibling day allowed him to make new friends and talk to others in a similar situation. Being in that kind of environment made it easier for him to open up, which will hopefully help in the long run.”

The Harvey Hext Trust charity gave William a beautiful personalised siblings’ memory box, which he was able to design himself. He was also given a memory bear that allows him to place something special inside so he can keep a part of his little brother with him wherever he goes.

Lee and Emie plan to continue their counselling sessions for as long as needed and say they will always be indebted to EACH. In addition to staff, they also have a heartfelt message for those who volunteer, donate and raise funds to keep the charity going.

“In terms of the people who do so much, and give so generously in terms of time and money, saying thank you doesn’t seem enough,” said Emie. Describing the charity as amazing, which it definitely and obviously is, doesn’t even get close to explaining the way I feel.

“EACH has helped us enormously but also those around us, as counselling was offered to anyone in our immediate family who wanted and needed it. My mum, Christine, for instance, currently receives counselling with Andy (Jaggard).”

Lee agrees wholeheartedly. “There’s so much knowledge and experience within the hospice and we’d be completely lost without the team at The Nook,” he said.

“The journey doesn’t suddenly end when you lose a baby or child. In terms of processing our thoughts and emotions, it’s an ongoing thing and very difficult to deal with. Coming here makes us feel more normal, in terms of our grief.

“Sometimes it can be hard talking to family and friends, because they don’t understand. However, here we can talk openly about Theodore. People remember him and want to talk to us about him.

“It’s invaluable and having this support every step of the way is truly priceless.”

Published in October 2022

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’s invaluable and having this support every step of the way is truly priceless.

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