Without places like Zoë’s, I don’t know how we’d cope
Quality of life, for tiny patients and their families, is at the heart of this unique hospice. By Madeleine Howell
‘It’s been an emotional day, but a joyful day,” reflects Tamara Taylor, the 115-times capped England Women’s Rugby World Cup winner. We’ve spent the morning at Zoë’s Place Baby Hospice in Middlesbrough, meeting baby Emilia Lawson (who celebrated her first birthday on Nov 18 with her elder sisters Annabel, 10, and Penny, six) and her mother, Lynne Lawson.
Today, Emilia is smiling contentedly, cuddling her toys and relaxing on a bean bag in the sensory playroom as Tamara and the paediatric nurses – who provide her with one-on-one care for 24 hours, once a week – fuss over her. It wasn’t always this way: Emilia suffered a severe brain injury at birth, and it has taken what Lynne describes fondly as “the proverbial village” of Zoë’s Place to raise the happy baby we meet today.
“I honestly don’t know where we would be if we didn’t have Zoë’s,” says Lynne. “We’d hit a wall and I almost felt we’d failed, giving in to the idea of taking her to a hospice. The first time I arrived, I was crying. But it’s a little piece of heaven on earth, loving and caring. We were instantly at ease, and she’s improved so much since she began her visits.”
Projects such as Zoë’s Place, which provides palliative, respite and endof-life care to babies like Emilia, with life-limiting or life-threatening conditions, need all the help they can get. It is funded with help from Wooden Spoon, one of three charities supported by the Telegraph’s Christmas appeal.
The children’s charity of rugby, Wooden Spoon uses the sport as a platform to raise funds for life-changing projects for children with disabilities or facing disadvantage. Tamara is here today in her role as honorary president of Wooden Spoon Durham.
Zoë’s is the UK’s only hospice dedicated solely to infants from birth to the age of five. A community service with no catchment area, it accepts children from all over – though families tend to be from the North East. It opened in 2004 with a capacity of four full-time, and can now care for up to six infants overnight at a time, and more on rotation throughout the day, depending on each family’s needs.
Tamara has visited Zoë’s Place before in her role as Wooden Spoon ambassador. In May, she took part in the highestaltitude game of contact rugby ever at Mount Everest’s advanced base camp to raise more than £250,000 for Wooden Spoon. “Zoë’s is a special, home-from-home place, not clinical or sad, like you might expect a babies’ hospice to be. It’s such an honour to be able to support their work,” she says. Earlier this year, Zoë’s Place received a grant from Wooden Spoon’s corporate supporter, Rugbytots (a UK-wide rugby play scheme for children) to buy two desperately needed special needs therapy cots.
Named Zoë’s after the Greek word for “gift of life”, the site is a grand 18th-century farmhouse off Normanby High Street, with a chapel adjoined (the building was once a convent). As well as four nursery bedrooms, a kitchen, laundry, specially equipped bathroom, reception areas and the sensory room (partially equipped with money from TV Secret Millionaire David Jamilly), there’s also the Rainbow Suite, for parents who need to stay over, with a sitting room and bedroom in which to be near their baby at end-of-life.
While there’s no overtly religious element to the work at Zoë’s Place, the chapel is a peaceful space which will soon host an annual Christmas nativity play attended by parents, siblings, staff and volunteers. Zoë’s also offers siblings groups, bereavement groups and social events for the community. “It’s so important for my two other daughters to be involved. I know they miss the time we had before the responsibility of caring for Emilia,” says Lynne. “But meeting people with kids going through the same thing makes us feel less alone.”
Funding remains an ongoing challenge: the hospice is almost wholly reliant on donations and the support of the local community. With access only to limited NHS funding (an annual grant of about £200,000), it has to raise a minimum £1.4million per year just to keep the doors open and maintain the level of medical care it currently provides. As we gather on the pews to hear Lynne tell Tamara more about her experience, dozens of volunteers outside in the gardens and grounds are busy setting up the Christmas lights ahead of a grand switch-on event.
“Emilia was born at North Tees hospital in the lead-up to Christmas. It wasn’t a good start: she didn’t breathe for 23 minutes before they incubated her,” Lynne tells us. “I didn’t get to see her immediately. I’d had an emergency [caesarean] section, woke up after the anaesthetic, and she wasn’t there.” Emilia was taken to James Cook University Hospital in Middlesbrough for therapeutic hypothermia for three days. “She was sedated, and we were told she had suffered something called hypoxic-ischemic encephalopathy.” HIE is a birth injury caused by lack of oxygen or blood flow, also known as birth asphyxia.
“At first, we were told that the brain damage she had suffered as a result was only mild to moderate, but after an EEG when she was five days old, we found out it was severe. She was so small, so vulnerable and couldn’t breathe, with no reflex or strength to either cough or swallow. Her prognosis wasn’t good. We took her home for Christmas but because she was unable to swallow she had to be nasogastric tube-fed, and was at risk of choking.”
The first three months at home were “awful”, reflects Lynne – until respite was arranged for her at Zoë’s for five days. “At that point, I was exhausted – but for the first time it felt like everything was going to be OK. We’d only just moved to this area so we didn’t have friends or family nearby. My husband is away a lot and my mum had passed away when I was pregnant. I think we would have crumbled as a family if Zoë’s hadn’t stepped in to help.
“It allowed me a break from her therapies and the nurses advised us to ask for a pump to help with feeds, which transformed our lives. Emilia and her needs had taken my attentions away from my other two daughters, and now for one day each week I have time to focus on them, which is so precious. However hard it gets every other day, knowing there is respite makes it more manageable.
“Emilia had gastrostomy surgery in August, and is now fed through the peg in her stomach. The nurses have continued to offer us advice. She’s got so many professionals to help her to enjoy the best quality of life possible, and I can be confident she gets everything she needs, from sensory play and speech and language therapists to dietitians and physiotherapy.”
This year, thanks to Zoë’s Place, Christmas 2020 promises to be very different for Emilia and her family. “She might not be meeting the same milestones as other children her age, but to see her now, she’s come so far,” says Lynne. “The work of charities like Wooden Spoon is so important. Places like Zoë’s wouldn’t survive without their help – and to know that there are people working to raise money for children like Emilia is so uplifting. If Zoë’s wasn’t here, I dread to think what situation we’d be in.”
‘To know there are people working to raise money for kids like Emilia is so uplifting’