Claire House Children’s Hospice’s Butterfly Bake provides incredible support for families

Every year, people across Merseyside fire up their ovens to support Claire House Children’s Hospice’s much‑loved Butterfly Bake.

Behind the flour, frosting and feel‑good fundraising lies a cause that couldn’t be more moving — a chance to ‘raise some dough’ for the hospice’s Butterfly Team, who support families during the toughest times.

Mums Ashlea (Ash) James and Michelle (Shell) Roberts, both 34, share their story of their precious daughter Emmy-Grace, who died when she was nine months old, and how their family have been supported by Claire House.

They said:

“When you’re first pregnant, you don’t think anything will go wrong. We’ve now learnt differently. At the 20-week scan, they told us that Emmy had a heart condition. At that moment, your whole world just falls apart. The nurses tried to introduce Clare House to us and we said, ‘no’. We thought it was a death sentence. Eventually, we changed our minds, and we’re glad we did. They gave us the support we didn’t know we needed.”

Ash and Shell explained that before Emmy was born, they were assisted with a birth plan, which allowed them to hope for the best and plan for the worst. They had a C-section and Lucy from Claire House was there at the birth.

They continued:

“When I first saw her, I gave her a dirty look and said ‘who is she?’ but I soon realised she was there for us and cared about our feelings. We felt seen and heard. She took photos and made videos that we wouldn’t have thought of doing and are now really precious.”

Ash and Shell revealed that when Emmy was born, she had complex health needs, and the first diagnosis they received was hyperplastic left heart syndrome, but there were lots more to come.

They explained:

“She was put on end-of-life care, which we didn’t want. We felt that if Emmy was ready to fight, we’d fight alongside her. At four weeks old, we had a meeting with doctors when they told us her condition was worse than they had thought, and they felt she was too ill to operate. We were in total shock, and the meeting didn’t make sense. Luckily, Paula and Lucy, from Claire House, were there to listen and arrange a follow-up meeting when things could be explained again.”

Speaking on the situation, Ash and Shelly mentioned that having someone compassionate to talk to was vital, and Claire House made that possible.

Going into more detail, they added:

“We lived in Alder Hey Hospital for six months, as our little madam fought against the odds. They said she only had a one to two percent of survival. During our stay, the team at Claire House kept coming to the hospital to see how we were doing. It was nice, as you can feel isolated and lonely in that position. We’ve got two other daughters, Freya and Layla. It was hardcore for them, we tried to be together as much as we could, but things would happen, and we’d have to go back to the hospital. You live with the guilt of having to prioritise. As the rest of our family weren’t allowed into intensive care, it was nice to have Lucy and Paula on hand, who could see Emmy grow.”

After six months, Emmy was well enough to go home, but they were in and out of the hospital and spent Christmas day in the Countess of Chester Hospital when she got sepsis. In January, she went into hospital for surgery and things went downhill from there, with sadly Emmy passing away from pneumonia.

Ash and Shell continued:

“Once Emmy died, it felt like she was taken away from us when we just wanted to be close to her. In the hospital bereavement suite, we couldn’t bathe her or walk with her in the garden. We were given the chance to drive her to Claire House and that’s when everything changed. It was like we had Emmy back. We could put her cream on, so she smelled like her. We stayed in the hospice’s Butterfly Suite for five days. I knew even when we weren’t with her, she was being checked on [by the Butterfly Team] and the music she liked was playing. We also made a page for Emmy in the Claire House memory book.”

While they were at Claire House, it was Layla’s birthday, their second eldest. For Layla, spending your 8th birthday in Claire House was not ideal, but the care team made it special by baking a cake and holding a party, Ash and Shell shared.

After Emmy’s funeral, the family thought the support would be over, but that wasn’t true.

Speaking about getting pregnant again, they said:

“We were very anxious when we got pregnant again with Roux. Claire House was there throughout the pregnancy to support and reassure us. When you’ve been through what we have, your anxiety hits the roof and all you can do is think about the things that can go wrong.”

Emmy died in March 2023, and Roux was born the following March.

Ash and Shell said:

“He knows who Emmy is – we don’t want her to be forgotten as she is still a part of our lives. Last year, we had a big party with all the family to celebrate her birthday. Layla has been on a residential with other siblings who have been through similar experiences. To be with those children, it’s like a community. She feels safe. And Freya has been to Alton Towers with the sibling group. She’s had counselling as we worried she wasn’t dealing with her emotions. Even Roux goes to the mini siblings group. We have also had bereavement support from the Wellbeing and Therapies Team. You walk around with a smile on your face but on the inside it’s different. We have been able to talk through our emotions and grief with our therapists.

To families facing this, please don’t dismiss help or think a hospice means a death sentence, it doesn’t. Unfortunately, we lost our baby, but we know she was honoured in life and the support we had from Claire House helped us to do this.”

Last year alone, the charity supported 124 babies, children and young adults at the end of their lives — a reminder of just how vital this lifeline is.