Mums Ash and Shell tell us about their precious daughter Emmy-Grace, who died when she was nine months old, and how their family have been supported by Claire House.

"When you’re first pregnant, you don’t think anything will go wrong. We’ve now learnt differently.

"At the 20 weeks 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.

"Before Emmy was born they helped us with a birth plan, which allowed us to hope for the best and plan for the worst.

"We had a C-section and Lucy from Claire House was there at the birth. 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.

"When Emmy was born, she had complex health needs. The first diagnosis was hyperplastic left heart syndrome, but there were lots of others to come. 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.

"Having someone compassionate to talk to was vital, and Claire House made that possible. We felt more hopeful when a nurse said she could need a tracheostomy to help her breathe for the rest of her life. That made us think there was something that could be done.

"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. They allowed us to get a bit of time away from her bedside by sitting with her, so we didn’t have to leave her alone.

"After six months, Emmy was well enough to come home. But we were in and out of hospital and spent Christmas day in the Countess of Chester Hospital when she got sepsis.

"In January, she went into hospital for surgery, but things went downhill from there. She went up-and-down, but a little body can only take so much. In the end, she died of pneumonia. We were in shock.

"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.

"When we were at Claire House, it was our daughter Layla’s birthday. We gave her and her big sister the choice of whether they wanted to come to the hospice and do birthday celebrations or not. They both decided to come.

"For Layla, spending your 8^th birthday in Claire House was not ideal but the care team made it special, baked a cake and held a party. We really appreciated this as we were full of grief, and we just didn’t know what to do.

"After Emmy’s funeral, we thought the support would be over, but that hasn’t been true. 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 though 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. 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."