'I couldn't hold my baby': how Covid hit the families of very ill children

Parents and professionals have been devastated by the impact of the pandemic on some of the UK’s most vulnerable patients

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.

“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 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.

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.”

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Source: The Guardian, 22 October 2020