Shared experiences

Very many thanks to all the parents, siblings, families and friends, who have allowed us to share their experiences on this site.

Lucy’s Story

When our first daughter Amy was almost 3, I became pregnant. I had pre-eclampsia with Amy so I had my BP checked every fortnight as a precaution. However at 26 weeks pregnant I was again admitted to hospital with identical symptoms. Whilst there a heart scan revealed the baby was showing signs of distress so I was prepared for theatre.

Lucy weighed 1lb 15oz, a little smaller than expected for a 27-week gestation but the early signs were encouraging. She made remarkable progress, even overcoming a heart problem in her first week.

At 11 days old it was thought that Lucy might have an infection as her oxygen requirements were creeping up, so she was put on a course of antibiotics. Two days later my Dad came to visit us both. We spent most of the day with Lucy. Late in the afternoon the consultant had a difficult half hour trying to settle her following a problem with her ventilator tube. Finally at 5.30pm she was snug and sleeping so we kissed her goodnight and left.

At about 7.15pm my mobile phone rang. I expected it to be my husband, Richard, calling for his daily update and was taken aback to hear an unfamiliar voice. The caller explained that she was a nurse in the SCBU – Lucy was poorly, could I come back in?

Once back at the hospital, I rounded the corner of the SCBU to see Lucy surrounded by screens. The sides of her incubator were down and she was lying very still. Lucy had begun to deteriorate at about 6.45pm. Her blood oxygen saturations had plummeted. The consultant had tried desperately to stabilise her before I was called.

I tentatively touched her hand and all at once I knew she was going to die. Lucy still had the ventilator tube down her throat and a nurse removed it once she was placed in my arms. Her little tongue was poking out at me. How tragic I thought, that my first proper look at her face and I am about to say goodbye. Lucy died in my arms at 7.30pm.

My instinct was to rock her gently and pull the blanket tight around her to keep her warm. Richard arrived with Amy and we spent the next two hours alone with Lucy in a room just off of the unit. I wanted to stay there forever. Finally we left and went home.

Lucy had died of Pneumonia. Her one good lung couldn’t cope on it’s own. We visited Lucy regularly both at the hospital and at the chapel of rest before the funeral took place. Other members of the family did too and this was a great comfort to us.

It is now eleven weeks since Lucy died but it still feels like yesterday. I should still be pregnant with her – my life should be so different. I always feel like there is someone missing – we all miss her desperately.

At 1lb 15oz no one can really expect a baby so small to survive. But we have a constant reminder that it can and does happen. Amy was delivered at 26 weeks and weighed 1lb 9oz when she was born and is now a fantastic three and a half year old.

Amy thinks Lucy is in charge of keeping the stars in the sky nice and shiny – I think that must be a wonderful job to have.

Joanne