Littlehampton mum whose baby is in hospital shares second lockdown fears

A Littlehampton mum whose premature baby was born just before lockdown is backing a new report which highlights the pressures of caring for seriously ill children during the pandemic.

Wednesday, 4th November 2020, 2:17 pm

Kelly Stoor’s daughter Kaia was born 14 weeks early on March 12.

At eight days old she was put back on a ventilator because her stomach had descended and this was affecting her breathing.

Doctors thought Kaia might have necrotising enterocolitis: an extremely fast-acting disease that causes the bowel to inflame, rot and perforate and can be fatal. It also caused Kaia to have E. coli sepsis.

Kelly Stoor and her daughter Kaia, from Littlehampton, feature in the Rainbow Trust's report on the impact of the pandemic on seriously ill children and their families

Her condition was so serious she was moved from QA Hospital in Portsmouth to Southampton Hospital, 50 miles from the family’s home in Timberleys, to give her a chance of survival.

With no driving licence and hospital accommodation for parents closed, Kelly, 34, endured four desperate weeks apart from Kaia while she had two emergency bowel operations.

It was only when the hospital referred Kelly to the Rainbow Trust children’s charity that she could visit Kaia as her family support worker from the charity, Amanda Haymer, drove her the 100-mile round trip once a week. “She was an absolute life-saver,” Kelly said.

However, she still had to visit alone due to visitor restrictions, leaving her husband and three other children at home. Kelly said: “To see Kaia in intensive care on a ventilator, incredibly swollen, cannulas and wires everywhere... I didn’t even know how to touch her. Going through all that and not having my husband next to me was horrendous. I absolutely hated every minute of it.”

Kelly Stoor and her daughter Kaia, from Littlehampton, feature in the Rainbow Trust's report on the impact of the pandemic on seriously ill children and their families

With Kaia facing further major bowel surgery in December, Kelly is feeling immensely anxious. She said: “If the same pandemic restrictions are still in place in December, my worry is I don’t think I can go through it all on my own again. I’m not sure how I kept my head above water the first time. Mentally it was a massive strain.

“Covid-19 has made it incredibly difficult and a much lonelier journey than it ever should be. We watched the government briefings and nothing was ever mentioned about parents with babies in neonatal care – we’ve been forgotten about.”

Kelly and Kaia feature in a report by the Rainbow Trust: Pandemic Pressures – The Struggles and Resilience of Families Caring for a Seriously Ill Child. The charity said it highlighted the impact of hospital Covid restrictions and how parents and siblings bereaved in the pandemic could not properly grieve.

Parents of seriously ill children had to rely heavily on charities for urgent practical and emotional support during the pandemic, it added. The report urged Health Secretary Matt Hancock ‘to urgently address the long-standing gap in funding for this vital support to benefit families at a time of great anxiety when they need it more than ever’, the charity said.

Kelly Stoor and her daughter Kaia, from Littlehampton, feature in the Rainbow Trust's report on the impact of the pandemic on seriously ill children and their families

At the start of lockdown, a Rainbow Trust survey of families it supported found that around 80 per cent of respondents said their family situation had deteriorated since the pandemic, and nearly 60 per cent said the same for their mental health.

Zillah Bingley, Rainbow Trust chief executive, said: “The pandemic continues to be a lonely and distressing experience for many families supported by Rainbow Trust who are caring for a life-threatened child. It is vital the experiences of these families are heard by decision-makers which our report aims to do, so they can help shape and improve the services required during this challenging, exhausting and frightening time.”

Kelly Stoor and her daughter Kaia, from Littlehampton, feature in the Rainbow Trust's report on the impact of the pandemic on seriously ill children and their families