When Mum Vicki went for a scan for her fourth child she was anticipating a happy and positive day. But, instead, 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.
“The doctors pretty much told us to terminate the pregnancy straight away and move on the next one,” Vicki says, “but I wanted some more answers.”
She was referred to specialists and was told that her precious little girl had less than a one percent chance of surviving. “Even if she did survive, she would be wheelchair bound, she would never breathe, never see, never hear. But they also couldn’t guarantee that,” Vicki explains.
Vicki quickly turned down the option of a termination: “I wanted to keep on going. I wanted that piece of paper that said when she was born, she was considered to have been alive, and that no matter what happened – I would have got a cuddle.” And during the pregnancy 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.
Support in any way
“I contacted Lucy, a Community Nurse at the hospice, who listened to our story and said that they were there to support us in any way. Whether Faith passed away at birth or if we needed end-of-life care, we wouldn’t just have a baby and have to walk away.”
The family visited the hospice on a chilly Sunday morning, with Lily and Logan, Vicki’s older children, and it was nothing like they thought it would be. “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.”
You walk in there and there is unbelievable comfort, it instantly felt like a home away from home.
For the whole family
Faith was born in January 2019 and she defied all expectations and was born breathing, happy, healthy, and alive. “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, is tube fed 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.”
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 new equipment, for example.
We can’t live every day like it is our last, but we almost have to, because any day could be her last.
“We also never know where to take Faith, she gets sensory overload sometimes, but Chestnut Tree House help us find perfect events that Faith and the older children enjoy together. Because of their support, we have been to a sensory circus, a pantomime and even on the i360!
“And that’s the thing about Chestnut Tree House, they aren’t just there for Faith, they are there for the whole family too.”
Lily, Faith’s oldest sibling, benefits from the sibling’s day that are run at the House, where she meets other siblings and makes new friends. “Lilly met a little girl through Chestnut Tree House last year who is her age, but in a wheelchair and can only communicate through slight eye movement. She’s made friends with her and her sister and they sit there having a laugh. It’s great for her to see that there are other families like us. It gives her people to talk to who understand and it has given her a more positive outlook on life.”
When asked what life would be like without Chestnut Tree House, Vicki says, “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.”
“Even during the pandemic Chestnut Tree House has provided unbelievable support to our family and I am so grateful for everything they have done for us and continue to do for our family.”
Children’s hospices like Chestnut Tree House provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek by sharing this story or supporting our work.