Elise's Story - Edinburgh Children’s Hospital Charity

Elise's Story

TW: Surgery

Meet Elise. Elise suffers from congenital scoliosis and kyphosis – a deformation and abnormal twisting of the spine. 

By two years old, she had already had three extensive surgeries – one to straighten her spine and two emergencies surgeries due to infections and problems caused by the first. Now 8, she has recently undergone her most harrowing surgery to date.

Dad Richard says, “As Elise has grown, sadly her spine has deformed again. This time, the surgeon had to remove two of her ribs, move all her organs out of the way and build a scaffolding from the removed bones to support the weakness in her spine. This has left her with two large wounds, one right round her side and another down her back. 

Spending so much of her short life in hospital has had a big effect on our whole family, with a lot of disruption and stress. Elise’s big sister Catriona, who is six years older, really struggled with things initially and still finds it upsetting.

On the day of Elise’s surgery, my wife and I spent the afternoon in The Hub as we wanted to be nearby but needed to be someplace calming. It was brilliant and the team looked after us so well.

Richard, Elise's dad

Support from ECHC

“Elise herself deals with it quite well but she really misses her pals. This time round her class all made her get well soon and birthday cards, and the school sent videos from her friends, which really helped. 

Everyone at the hospital is wonderful. We’ve had great help from the Crichton, Critical Care and Tantallon/Dunvegan wards. The nurses and play specialists are brilliant and can’t do enough. 

“We’ve also had so much support from ECHC. When Elise was recovering and allowed out of the ward we took her to The Hub, both for a change of scenery but also to take part in the activities. She had a fantastic time and it totally lifted her up when she was getting bored.

Youth Group

“One thing that has really helped us is the charity’s hospital youth group on a Monday. Catriona joined and really gets a lot out of it. It was a particularly fantastic support for her while Elise was in hospital. 

Any hospital stay or major surgery is stressful and upsetting, but everyone has been so good to us. I try to take part in some of the fundraising events for ECHC to “pay something back” so to speak, but that doesn’t even scratch the surface. It’s difficult to put into words just how grateful we are for all the help we’ve received.” – Richard, Elise’s dad 

The Hub is our home-away-from-home within the hospital – a place for families to go for a break from the wards for activities, a chance to offload or just a hot cuppa and a biscuit.