Kelly Stoor gave birth to her daughter, Kaia, 14 weeks early. On 12 March, the midwife held her up for Kelly to see before whisking Kaia off to the neonatal unit for critical care.
Kaia became seriously ill and was transferred to a hospital in Southampton, 50 miles away from home, for specialist treatment just before lockdown was imposed on 23 March. While there, she teetered on the edge of life and death for weeks and underwent life-saving surgery twice.
The impact on Kelly, her husband, Max, and their other three children has been enormous. Hospital restrictions in April dictated that only one parent was allowed to visit. Both parents were not able not hold their daughter for the first time until 88 days after she was born. When Max was finally allowed in alone to see Kaia after nine weeks, he had to look at the tag on the incubator to check it was her.
“It was extremely difficult,” says Kelly. “I wasn’t allowed to hold her because of Covid. I had to wear gloves if I was going to touch her. We didn’t know if she was going to make it, and Max and I weren’t allowed in together to be with her. There was one time I was with her for three hours and I couldn’t cope any more. I wanted to break.”
Kelly is not alone. In the UK, at least 25,000 children are living with conditions that require palliative care support and their lives, along with those of their families, have been upended by the coronavirus pandemic and accompanying restrictions.
A report by Rainbow Trust released found that lockdown was a distressing experience for many; 80% of those surveyed by the charity in April said their situation was worse or much worse than before lockdown. Nearly 60% of parents, meanwhile, say that their mental health is worse than before the pandemic.
Dr Emily Harrop, a consultant in paediatric palliative care, can understand why. “Children [with life-limiting conditions] are a highly marginalised, forgotten group,” she says. “They’re very isolated. As soon as services are limited by Covid it becomes even more clear how vulnerable some of these people are. Visiting people and seeing what their day-to-day lives have been like in 2020 breaks your heart.”
Families have had to take on the strain of caring full-time for a child with a life-limiting illness, such as cancer or neurological conditions, with little to no support. There has been no respite, explains Dr Jon Rabbs, a consultant paediatrician and trustee for Rainbow Trust. When lockdown was announced, many community healthcare services had to stop face to face contact and special schools which supported children were also closed. “One of my families is at breaking point, they are so exhausted and worried,” he says.
In child healthcare there have been delays, he says. Urgent treatment is always available but follow-up care has been cancelled or delayed in some places. “In my practice we have not missed any significant relapses,” he adds. “But imagine the worry not knowing whether things were going to be OK or not.”
Providing clinical treatment dressed in full personal protective equipment and navigating hospital restrictions has also been difficult, both for families and staff who are used to giving compassionate care. In some situations, staff found ways to allow two parents to be with a dying child, or to make it possible for grandparents to say goodbye to a stillborn child before going to the morgue, for example.
Life has also been tough for Tara Watkin and her family. They live in Essex, which has now been placed under tier 2 restrictions because of rising Covid cases. Her three-year-old son, Asher, has thyroid cancer and a rare endocrine disorder which meant they had to shield when lockdown was announced.
“I’ve hardly left the house since March,” says Tara. “We don’t know how Asher may respond to coronavirus. It’s like playing Russian roulette with his life. We have to risk-assess everything and for us, the safest place to be is at home. But there are flipsides to that too.” Tara explains that she has had to pull their daughter Tallulah, aged seven, out of school to avoid being charged weekly non-attendance fines from their local authority. Their younger daughter Esme, aged four, has lost her school place for September 2021.
Tara and Kelly, and thousands of others in similarly heart-rending situations, have felt abandoned so far in 2020. A study by charity Together for Short Lives in collaboration with Martin House Research Centre and the University of Southampton revealed that most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the coronavirus pandemic.
Kelly remembers watching the daily coronavirus briefings and wondering whether families with sick children or babies in neonatal units would be mentioned. “There was nothing to support people in this category,” she remembers. “How many people are there not knowing what they can and can’t do? We’ve been forgotten about.”
They are both worried about what the coming months may bring. Kelly’s daughter, Kaia, faces another big operation in December. “Kaia is a miracle, she’s my little hero … She’s doing well but it’s been a nightmare and I don’t know whether Covid is going to let up.” The thought of having to go through the ups and downs of seeing her daughter fighting for her life alone is almost too much to bear.
Tara misses friends and the support they gave her, but she’s used this time to develop skills. She has completed a qualification in counselling skills and started a psychology degree. “You get to the point where you think, ‘Is this what I want my life to be?’ It’s important to have other things and not put life on hold. I’m trying to find chinks of sunlight in the darkness to keep me going.”