Baby Isabelle was born prematurely with cysts on her brain – which caused cerebral palsy, blindness and severe epilepsy. She sadly died aged just one in 2013 and her devastated family were cared for by Shooting Star Chase after her short life, and continue to receive vital support. Isabelle’s mum, Leanne, is taking part in the Sunrise Walk to help bereaved families like hers.
Isabelle was born in December 2011 over two months early and spent four weeks on the special baby care unit, where she was feeding well and getting stronger. But it was a few weeks after they came home when Leanne spotted worrying signs that something might not be right with her newborn.
“It wasn’t long before her body was quite rigid and she couldn’t turn her head, she lost her smile, she’d cry constantly throughout the day and night, and the seizures were relentless– she’d have hundreds a day. She couldn’t swallow and her tongue was fixed in a set position so she had to be tube fed again. She’d also have apnoea attacks where she’d go blue and couldn’t breathe.”
Leanne was caring for Isabelle as well as her siblings, Freddie and Faith, who were both under 3-years-old, on an average of one hours sleep a night. Eight months in, with Leanne visibly exhausted and at breaking point, Isabelle’s community nurse suggested they go to Shooting Star Chase for some support. They were referred to Christopher’s – our Guildford-based hospice.
“I was a bit worried about going to the hospice but the nurse reassured me it was somewhere I could have a break and not worry. I could leave Isabelle with the staff, they knew how to do everything and she would be safe. When we first visited I sat in the car park not knowing if I wanted to take her in. Then I walked in the door and was so surprised. It wasn’t clinical and structured – it was just like a house. I felt so relieved.
“I remember the short break we had there as a family – it was the first time I’d slept for six hours in months. It was brilliant. We also went to Christopher’s Christmas party and Freddie and Faith absolutely loved it. They were coping with so much at home so it was amazing to see them being made a fuss off by the staff and having fun.”
Not long after Shooting Star Chase started supporting Leanne and her family, Isabelle’s condition started deteriorating rapidly.
“Isabelle wasn’t quite right over Christmas and New Year, and on the 3 January I remember it being a particularly peaceful day. Isabelle had hardly cried all day and it was a bit eerie – like the calm before the storm. That evening her apnoea alarm went off and we cleared her airway. It sounded again shortly after, which never happened so I knew it was really serious. We reached her cot and she had died. The paramedics tried to resuscitate her and the doctors did the same in the hospital – and it was like watching car crash. I wanted to stop looking but I couldn’t take my eyes off her. I couldn’t physically move and speak. And the moment they announced her death I screamed and couldn’t get my breath.”
After Isabelle died the family went straight to Christopher’s to stay until her funeral. Isabelle’s body laid in rest in the Mistral Suite at the hospice, a dedicated area where a child can lay at rest, allowing their family to say goodbye in a familiar and supportive environment.
“Isabelle’s birthday was a few days before she had died, and we’d just had her Christening and Christmas so her cards and presents were all around the house. Going home was the last thing we wanted to do. For the first three days at Christopher’s I just sat there not able to function and the staff did everything for us – they did our washing, made sure we ate and looked after Freddie and Faith. They even organised a little party for Freddie on his birthday which was a few days after Isabelle died. They did it all – banners, balloons, bunting, cake and a present. He still says it was his best birthday.
“They understood at Christopher’s. It was all the little things you wouldn’t even think of when you’re in that situation and they just do it for you. I was worried I’d smell the aromatherapy oils they used in the Mistral Suite when I was out and about shopping or something, and the memory of that room would make me breakdown there and then. So the therapist sat with me and we picked my favourite smells and she put them on a cycle so I wouldn’t get used to the same smell.”
Isabelle’s family were offered practical and emotional support to help them cope with her death, as are all bereaved families at Shooting Star Chase. This can include counselling, support groups, memory days and pamper days for parents, grandparents and siblings – for as long as needed.
“We went to a bereaved parents support group and I wasn’t sure about it at first but it was really nice meeting other parents who knew what you were going through. We’d talk about things you can’t really discuss with other people – like if you put all of your children’s names in cards and how our friends reacted in different ways after our child died. We also go to the memory day every year, which is a really special time for us.
“Since Isabelle’s death the hospice has helped Freddie loads. You wouldn’t think a four year old could get depression but he’d be in his bed crying his eyes out, he had no interest in anything and he’d lash out. Christopher’s did some play therapy with him and helped him cope with his grief – and it made a huge difference. The therapist at the hospice even spoke to his pre-school and later, his teachers at school, and explained how to handle Freddie after he’d been through such a difficult time.”
Leanne has been fundraising for Shooting Star Chase since Isabelle’s death, raising over £2,800 with sponsored cycles and her work as part of the Aldershot Friends Group. In 2013 Leanne completed the Sunrise Walk dressed in pink in memory her daughter – along with her family and friends. This year she’s taking part in her second Sunrise Walk – where she’ll be taking on a 20k route at dawn across stunning sights including Richmond Park, Bushy Park and Hampton Court Palace.
“The Sunrise Walk is such a lovely event because it raises money for bereaved families like us and I know just how vital the support from the hospice has been to me and my children in coping with Isabelle’s death. I can’t imagine what life would be like without Shooting Star Chase – I don’t even know what I would have done.
“My dad says the sunrise always makes him think of me up all night looking after Isabelle. I remember them seeming never ending because she’d be crying non-stop but when the sun came up there was a bit of relief and hope because we’d got through another night. He and my partner are doing the 20k route with me so it will be really special.”
Read more family stories here.