Claire House Family Stories - Lucy

“Claire House gave us the time we needed.”

Pregnant Liverpool mum, Liz, was devastated when she learned the longed-for daughter she was carrying could die at any point. But the support of Claire House Children’s Hospice helped her to make the most of the days they had together.

I was so excited when I found out I was having a baby girl. Compared to my pregnancies with my three boys, it felt like my healthiest pregnancy with me feeling better in myself.

But at our 12-week scan, the doctors found a hygroma, which we were told was like water on the back of the baby’s neck. And at 15-weeks I was told our baby, Lucy, had Edwards Syndrome and to be prepared that we could lose her at any point.

That was when we were introduced to Claire House, who helped to stave away the doom and gloom we could have felt.

When I went with Lucy’s dad and my mum to visit the hospice, I just sobbed and sobbed when we first arrived. I remember being devastated, because when you think of a hospice, you just think death.

But when we came out, I had the biggest smile on my face. It is just an unreal and amazing place. I knew then that we had made the right decision to accept their help and it gave me the confidence to keep pushing through.

You expect to feel sick because you are carrying a sick baby, but I felt great in terms of my body. Our three boys – Daniel, Ben and Cole – all knew that they had a poorly baby sister in mummy’s tummy and that she might not live. This meant I was even more determined to get five minutes with Lucy, anything more was a blessing.

At 35 weeks, I was induced because the longer we left her, the greater the chance she could have died in labour.

But Lucy pulled through the labour and was born on the 18th January 2016.

Claire House were the ones who came and picked us from the hospital. They knew I wanted Lucy to come home first and meet her brothers, just in case, because she could have gone at any time. There was no way this would have happened without them.

Because of the hospice team, Lucy’s family were able to be a part of her life and if anything did happen, the nurses were there right away.

Their support meant we were able to not only be in the hospice but also come home. Lucy got to have a bath at home, fall asleep in her cot and for me, having her there meant this was and still is Lucy’s home.

If we didn’t have Claire House, there would have been no quality of life for Lucy and we wouldn’t have had the kind of time with her that we did.

For us, we didn’t want the “I am so sorrys”, because Lucy had made it through the pregnancy and we were happy to get any amount of time with her. Louise, one of the Claire House nurses, helped so much with that. She brought the happiness and brightness when everything could have been focused on death.

I feel like Claire House gave me Lucy’s life. I could have had a sick baby and brought her home and been too scared to bring her out of the house, too scared to pick her up, too scared to do anything with her. And that is no life, that is no quality.

I will never be able to thank them enough for this time and even more so, for being there for us when Lucy did pass when she was 27 days old.

I had always wanted Lucy to be at home when she passed and Louise was there again for us.

We were all with Lucy; the boys, her dad, my mum and me, all on the bed with her. It was such a heart-breaking experience, the most horrific thing a parent can go through, but I can also say it was beautiful.

Lucy was surrounded by everyone who loved her, I sang her nursery rhymes and she went happily and naturally in my arms.

After losing Lucy, the support from Claire House didn’t stop.

Before the funeral, Lucy rested in one of the Butterfly Suites at the hospice, giving us that extra bit of time with our daughter that we needed.

Afterwards, Louise and the team were always in touch. Seeing them, it was people still talking to me about my daughter, not just the typical apologies or condolences. And as much as people mean well, that isn’t what you want to hear and the Claire House team helped to make me smile, laugh and just indulge in talking about my daughter.

For me, I had to take the positive out of having Lucy. She could have gone at any time, but she didn’t. Instead, she pushed through and we got to have precious time and make memories with her.

That belief has stayed with me after Lucy’s death, because I know she was born for a reason.

Today, Lucy is still a part of our lives. There isn’t a day where her name isn’t mentioned and I am so grateful that the boys, who were all under five at the time of Lucy’s death, have memories of their sister.

This helped the boys to also look at the positive. They have been able to see how Lucy’s life has brought so much goodness into our lives.

Lucy made me see my true worth. She made me go back to university and complete my Public Health degree and she let me have another two girls, which was my absolute dream.

Lucy truly has been a diamond in our family, our amazing little angel.