After discovering the devastating news that their one-year-old baby girl Lily wouldn’t have much longer to live, parents Kirsty and Aaron McConnell had to consider where they wanted her to be when she died.
During a time of confusion and stress when nothing seemed to make sense, the McConnell’s turned to Very Special Kids and stayed in our Family Accommodation where Lily peacefully died.
In addition to providing families with respite care, Very Special Kids Hospice also provides medical care at the end of a child’s life, in a home-like environment with support from a dedicated team of nurses and carers. Families can stay in the on-site Family Accommodation either with their child staying nearby in the hospice or in the same accommodation as them.
The support for every family is different, and we work with families to make the last days of their child’s life special in their own way, give advice on planning for what comes next, and offer ongoing support.
After Lily was born her parents noticed she was failing to reach her milestones and something wasn’t right. Kirsty explained “our GP referred us to a paediatrician who ran a series of blood tests. After seeing countless doctors we eventually found out she tested positive to Spinal Muscular Atrophy (SMA) Type 1, the most severe type. That same day, we were also told we probably weren’t ever going to bring her home.”
As the disease progressed, Lily’s muscles became weaker, including her chest. After spending one challenging month in ICU, Lily’s breathing improved and although her condition was still terminal she was able to go home.
The McConnell’s then turned to Very Special Kids after what Kirsty described as ‘a wakeup call’.
“One night at home Lily was struggling to breathe and we had to wait more than two hours for a nurse to come and administer strong medication for her. It was horrible waiting and watching her suffer.
As soon as we came to stay at Very Special Kids, we realised how much better it was. It was a huge relief knowing we had that immediate level of care with nurses next door in the hospice. Having Lily stay with us in Family Accommodation meant we could spend time with her and operate as a family.
The nurses would come and go but we’d still do normal things as if we were at home like cooking and having family and friends visit whenever we wanted. The best thing was it provided security of knowing help was next door.
Our other daughter Eliza was also with us and the nurses would play and engage her in the art and music activities happening in the hospice. We didn’t have to worry about Eliza which meant we were able to spend more time with Lily and make those last few days a lot less stressful.”
When the time came to say goodbye to Lily, Kirsty described the moment as heartbreaking but peaceful.
“It all happened so quickly but she was very calm and comfortable. Very Special Kids allowed us to do whatever we needed. After an hour of holding her, Aaron and I decided to take her to the hospice and place her in the special room.
The next day, we had family visit to say their goodbyes and our Family Support Practitioner Edwina was with us the whole time, supporting the entire family. Edwina also provided information about funeral directors and helped us make decisions when everything seemed foggy.
We didn’t leave Very Special Kids until Lily left. It was comforting to know she was in the next building and we weren’t ready to go until she did. Very Special Kids were so supportive the whole two weeks we stayed, I can’t speak highly enough of the services.
For me, it was so important being able to utilise my time just being a mum instead of worrying about medication – I could leave all of that to the nurses. Because in those final moments that’s what matters and that’s what your child needs you to be, a mum.”
