Harper's story

Our time with Harper

When Harper’s mum Marie had her first pregnancy scan, she was told that their daughter had an exomphalos, meaning some of her internal organs were growing in a sac outside her tummy.

At seven days old, it was discovered Harper had an infection. She also needed oxygen, and gradually began to need more and more help. At three weeks old, she was taken to ICU and put on a ventilator to help her breathe and give her heart a rest.

Unfortunately, after 14 weeks of trying everything to improve her lungs and heart, Harper sadly died on 25 November 2020.

Making memories

Mum Marie says: “During our time in hospital, the support we were given by the Palliative Care team and ECHC was amazing. If it hadn’t been for the charity, we wouldn’t have been able to spend as much time with Harper as we did. They made it possible for us to stay at the hospital for four months, saving two hours’ travel every day.

“The memory making activities Palliative Care and the charity helped us to do were so important. The nurses made us hand and foot prints and made a stamped image of Harper’s foot into charms for us.

“The first time her big brother Jackson and Harper met, they got matching knitted hearts, so they could feel connected to each other. After Harper passed away, they gave her, us, her grandparents and Jackson an elephant to remember her by.

“As Harper had spent her whole short life in hospital, we have no memories of being together in our house, or of doing things together like cuddles on the couch, walks around our village or day trips in the car.

“Coming home after five months away felt like it had all been a dream, like I’d somehow imagined her, and now the dream was over.

“Having these prints and pictures and elephants reminds me that she was really here and now we have pieces of Harper at home, where she belongs.”