ONE-YEAR-OLD Cara Rose has Pallister-Killian Syndrome, a rare chromosomal disorder – features can include hypotonic seizures, hearing and visual impairment, heart defects, intellectual disability, respiratory issues and limited/absent speech.
“Every case is individual. We don’t know how it’ll develop over time. All we can do is watch and wait and give her every opportunity. She does have a hole in her heart and is due to go for surgery. She’d be very vulnerable to the dangers of any respiratory infection, so we took an all-or-nothing stance. It wasn’t worth the risk, not for Cara Rose,” says Ruth, adding lockdown brought pluses.
“It gave us time to bond with her, to get her into a routine, which we hadn’t been able to do up to then because of all the hospital appointments and tests. Lockdown gave us a chance to build up her immunity and to keep her safe.”
Since Cara Rose’s birth, Jack & Jill Children’s Foundation has been an invaluable support. The charity provides front-line, critical home-nursing care and end-of-life support to 340 children country-wide. Aged from birth to five years, these children have highly complex medical and life-threatening conditions.
Jack & Jill nurses go into homes, giving parents/carers a break. During lockdown, home visits continued for over half of Jack & Jill families. For those self-isolating, the specialist children’s nurses continued their support by phone/video calls/garden visits/face-to-face walks/talks at a social distance.
With things opened up now, Ruth and Andrew are looking forward to resuming their Jack & Jill respite hours. “We’ve amazing family and friends, but there are elements of Cara Rose’s condition that are difficult to deal with without medical knowledge. She went through a phase of reflux and choking – we wouldn’t want to put that burden of responsibility on family or friends.
“Jack & Jill nurses have been instrumental in allowing us to switch off, to have time for ourselves – whether to pursue our individual interests or as a couple – knowing she’s in capable hands,” says Ruth, who’s going back to her library assistant job, while Andrew will be Cara Rose’s fulltime carer. “He’s an amazing dad. She adores him.”
And Cara Rose is a great baby, placid, chilled-out – and loves her food. “She’s such a trooper, a warrior. Every day she gets up and gets on with it. She’s inspirational. We absolutely dote on her.”