Spring is in the air and Easter is around the corner. And for lots of kids, it’s a time to get excited about chocolate eggs! But, did you know that most of the children and young people Chestnut Tree House children’s hospice care for can’t eat chocolate? This is because many of them, like Faith, are unable to eat or swallow food and might be tube fed or have specialised diets.
This Easter, instead of a gift of chocolate, Chestnut Tree House are asking the local community to donate and help fund activities that all children with life-limiting and life-threatening conditions can enjoy.
In 2018, Vicki, from Haywards Heath, went to a 16-week baby scan at her local hospital where she received the devastating news that her baby girl had an occipital encephalocele, meaning that her skull didn’t fuse so she had brain tissue and fluid leaking out of the back of her head.
“They told us that she had less than a 1% chance of surviving. And even if she did survive, she would be wheelchair bound, she would never breathe independently, never see, never hear. But they also couldn’t guarantee that,” said Vicki.
At this difficult time, the family’s bereavement midwife suggested a referral to their local children’s hospice, Chestnut Tree House, so they could explore their options for end-of-life care.
Explaining how she felt when the family first visited the hospice, Vicki said: “I expected to walk into a hospital, and I thought there would be a dark cloud over the place. The word hospice conjures up a lot of thoughts. But you walk in there and there is unbelievable comfort, it instantly felt like a home away from home.
“I remember saying ‘if we can get our little girl out of hospital for end-of-life care, let’s get her here as quickly as we can.’ We just felt safe.”
Faith was born at King’s College Hospital in London on Wednesday January 16th 2019. Despite her obvious brain exposure, she defied all expectations and was born breathing, happy and healthy. “We had a five-minute cuddle and it felt like a lifetime. When you are not expecting to have a cuddle with a baby that is alive, it’s huge.
“Faith has very complex needs; she is severely visually impaired, hearing impaired, is very delayed, has motor impairment, and has daily seizures. No one dares to talk about Faith’s life expectancy, because she has done amazing to even get this far. We can’t live every day like it is our last, but we almost have to, because any day could be her last.
“Faith has an unsafe swallow, meaning that she is tube-fed and on a specialist diet. There are lots of things she can’t eat, including chocolate eggs at Easter,” said Vicki.
The family regularly attend events in their local community that they wouldn’t be able to go to without the support of their local children’s hospice.
“Funds aren’t unlimited when you have a child with complex needs. A lot of your time and money has to go on getting to medical appointments and buying new equipment, for example. We also never know where to take Faith as she gets sensory overload sometimes. But Chestnut Tree House help us find perfect events that Faith and her siblings enjoy together. Because of their support, we have been to a sensory circus, a pantomime and even on the i360! And Faith’s older sister, Lily, has recently been to a crazy golf sibling activity day that she loved.”
When asked what life would be like without Chestnut Tree House, Vicki said, “I don’t know. It would take away a big part of Faith’s quality of life; the swimming, the sensory room, everything, we couldn’t do that without them”.