At the heart of this story are parents Jayne and Dave and their six children: including Betty, who is almost two years old.
In 2022, Jayne was seven months pregnant with Betty when she went for a routine check-up. Her husband followed her to the hospital, where they received unexpected news—the baby was in distress, and delivery would need to happen within 10 minutes. The family knew their baby would have Down Syndrome, but the premature delivery brought with it a series of complications they weren’t prepared for.
Betty was born early and spent the first 74 days of her life in the hospital. When she was finally able to come home, she struggled with breathing issues and often had to be rushed back to hospital after just a few days at home. Jayne recalls,
“It was normally two or three days at home, and then she looked unwell again.”
After numerous hospitalisations, Jayne reached a breaking point and took Betty to Alder Hey Children’s Hospital, where the medical team discovered several additional complications that had gone unnoticed. It was Alder Hey that introduced the family to Zoe’s Place, somewhere that would provide much-needed support.
“Zoe’s Place let us have some breathing space, because it’s nonstop. It’s literally nonstop all the time” Jayne says. “We do need that breathing space. And obviously coming here gives us that space to reset and get ready for the next period - So, whatever [Betty] decides to surprise us with at that time.”
The family reflects on the challenge of balancing Betty’s needs with those of their other children. Betty spent the first two years of her life either in their local hospital or Alder Hey, which meant missing out on many firsts. Her first birthday, Christmas, New Year, Easter, Halloween—
“her first everything, she was in hospital. We never had a first with her at home,”
Jayne explains.
“You miss out on so much. And then the children never got a sibling because she was just not there at any point. It was hard balancing the needs of our other children with trying to bond with a baby who was living in an incubator.”
Betty’s milestones were delayed and different from her siblings. She was initially tube-fed, and now she is PEG-fed. But when she finally achieved key developmental milestones, like her first smile or sitting up unaided, the moments were even more special.
“When she eventually gave us that first smile, it was completely magical. She's just recently learned to sit up unaided, and the other children were ecstatic that she could sit up by herself. So, each milestone is much longer coming, but it's so much more magical.”
The support from Zoe’s Place has been invaluable for the family.
“No matter how tired you are or how much it all seems, you know that at some point, close in the future [Zoe’s Place] are going to be able to just take over. We don't have to think about how many mls are left on a feed.”
Jayne shares,
“you can just hand her over and then I use that time, to go and do stuff with the other children that I can't do with her. So, like, for instance, Noah, who's three, in the summer, I took him to a farmer Teds. I had a lovely time but it actually struck me if I had had Betty with me, we couldn't have done half of the stuff that was there.”
Zoe’s Place isn’t just about respite care; it’s a source of advice and community for the family.
“Every time I’ve said I’m struggling with this, somebody [at Zoe’s Place] has had the answer. It’s more than just taking her for a couple of days; it’s for the whole family. We all get a benefit in different ways from it and she has lots of fun.”
“On the fun days, you come here for the siblings and for her to have a good time. I’m coming away with loads of information and shortcuts for things.”
As Christmas approaches, Jayne’s wish is simple:
“If we could have a Christmas Wish, wave a magic wand, it would be, everyone was at home, no one was unwell, there was no prospect of a pending hospital visit. Not just for us either. Like, for everyone that comes to Zoe’s Place. I'd like everyone to have their children at home. Because it's hard when they’re not. It’s very difficult.”
Our Christmas Appeal is an annual fundraising campaign delivered by Zoe's Place Baby Hospice. All income from the campaign helps to fund the cost of delivering care to babies and infants with life limiting and life threatening conditions in Liverpool and the surrounding areas.
If you’ve supported our appeal to raise £5m to build a new hospice, please don’t feel obliged to give again. If you do feel able to support us again then we are, of course, very grateful for your giving.
From our Hospice to your Home,
Merry Christmas!
Thank you and wishing you a warm and wonderful festive season.
* Charities pay a small fee for our service. Find out how much it is and what we do for it.
