Tillie, from Oxfordshire, was born in January 2021 during lockdown. She was her mother’s fourth child and had a healthy birth. But, a day later they noticed Tillie had breathing difficulties. She was rushed to hospital in Banbury, later ending up at the John Radcliffe Hospital on a life support machine. Then, just six days into little Tillie’s life, a decision was made to turn off life support. This is when she came to Helen & Douglas House for end-of-life care.
Despite her early complications, Tillie defied all odds and (in late 2023) is still a regular visitor to the hospice for supportive stays. At one day old she was diagnosed with a rare condition which meant that her right lung didn’t develop. This then caused other complications for her heart and surrounding organs. After the decision was made to turn off her life-support machine, they didn’t think she even survive the journey to the hospice.
Once Tillie and her family got to Helen & Douglas House, they were finally able to spend time together. Her three older siblings, Millie, Mason and Annie, could meet her for the first time, and get to say their goodbyes in a comfortable safe space. It was the middle of lockdown, and the hospital was only able to let one parent be with their child. At the hospice, they could be together for those final days.
The hospice also allowed mum and dad, Jodie and Darrell, to spend the nights with Tillie. When they thought she was dying it meant they could be there with her. Even when the hospice nurses would check on Tillie every hour they didn’t get disturbed. And if Tillie was crying, they would just take her off her five minutes and then put her back into bed.
Defying the odds
The family spent 15 nights at Helen & Douglas House after Tillie came off life support. At the hospice, she was on oxygen and lots of different medications. During this time her parents had to keep her as calm as possible to help her heart strengthen and even got told that we weren’t allowed to let her cry. Soon the family made the plan to go home with Tillie. The care team trained them on everything and anything they needed to do to keep Tillie healthy and confident to care for her on their own.
When we first shared Tillie’s story, she was around 20 months old (Oct 2022). Recently we caught up with her mum (Nov 2023). She told us that Tillie is a happy child who brightens up the hospice with her smile on her visits. She has had a great summer of 2023, with no hospital admissions. With winter coming, her mum is pleased to say she is as strong as she can be, with the all the bugs and viruses going about. She is vulnerable to respiratory problems and infections and has had many different types of illness over her short life. But, as her parents say, ‘she is a miracle and always pulls through. We monitor her stats at home as much as possible. We have oxygen at home, but sometimes she does need a bit of extra support through being nebulized. But we try and avoid the hospital where possible due to the risk of infection.’
Tillie’s life expectancy is unknown, but her parents say that she will always be on palliative care. At the moment she’s going strong, but again, the common cold could affect her chest. So as parents they always have to be alert and fully aware of how she’s feeling, noticing any changes. She goes for regular heart scans and visits lung specialists. The good news is that the longer she goes on, the stronger she gets in terms of adapting to her complications.
Supportive stays at Helen & Douglas House
Tillie and her family come to Helen & Douglas House for both regular supportive stays and for complex symptom management. When they visit as a family they often stay in our family flats so they can be on-hand if Tillie needs them. But, having time away from being a carer gives them the chance to spend time with Tillie’s older sister, Annie. They can give her attention without having to care for Tillie.
Tillie’s mum and dad, Jodie and Darrell, also get to spend time together as a couple. But feel happy to know that Tillie is being cared for. And, if she is in pain, or crying, she’s still safe. They are also close by if anything bad did happen.
‘It’s also the little special things they do, like put Tillie’s name on the bed when she comes for a supportive stay’.
‘Without Helen & Douglas House we wouldn’t have felt as strong and as confident to have a sick child like Tillie’.
Make a difference to children like Tillie
Did you know… A donation of £30 could help fund a play session in the hospice for a child like Tillie. Giving her a one-to-one carer and specialist materials to help with her child development, socialisation and confidence. As well as give her the chance to make special memories.