Jack & Jill: Angels in your darkest hour

Jack & Jill help normalise family life for those caring for children with serious health issues, says Helen O’Callaghan.

Jack & Jill: Angels in your darkest hour

Jack & Jill help normalise family life for those caring for children with serious health issues, says Helen O’Callaghan.

Like angels coming into your home so you can walk out the door — that’s how Rosscarbery-based mum Anita Jennings describes the nurses organised by the Jack & Jill Children’s Foundation, who provide her only child, Olivia, with 48 hours of home nursing monthly. The four-year-old was diagnosed in May with EIEE37 (early infantile epileptic encephalopathy-37) — a rare genetic condition.

“The gene involved was only identified and named in 2016,” says Anita, who runs a beauty salon, while husband David is a carpenter. Olivia was fine until she was six months old, when Anita realised milestones weren’t happening. “She was making no effort to sit up. She wasn’t rolling over or trying to crawl or get around the room on her own.”

Referred from physiotherapist to area medical officer to paediatrician — with a host of blood tests all returning clear — the next port of call was a neurologist, who ordered more tests, including MRI and lumbar puncture. “The lumbar puncture was the only one that came back with a variance from normal — low glucose-lactate reading in the spinal fluid,” says Anita.

This suggested Olivia might have difficulty processing/metabolising glucose. “Every test that came back clear, we thought maybe it’s just developmental delay, but with no improvement it was very frustrating, mind-boggling, and upsetting. You become obsessed with it. At the same time you’re trying to continue normal life.”

At two years old, Olivia developed epilepsy and medics advised a ketogenic diet. “She was on it 18 months with no major physical or cognitive gain. It’s an extremely rigid, difficult-to-maintain diet — everything has to be weighed, measured, and worked out in terms of ratios. You’re doing this for every meal, with every bite, every drink. And you have to do blood tests daily to check glucose and ketone levels.”

Halfway through, Olivia lost her ability to eat and drink and had to be fed naso-gastrically. “You’d go through hoops backwards if you had to for your child,” says Anita. It was decided to wean her off the diet.

It was slow progress. You can’t just stop, bang, and return to eating. We got Olivia back eating fully orally, but for drinking she has to be peg-fed — a tube into her stomach.

Going off the diet “freed up so much brain-space”, recalls Anita. “It had been so all-consuming.”

After multiple blood tests done in “different labs searching for different anomalies on different genes”, Olivia’s parents feel lucky to have finally got a diagnosis from a Stuttgart lab. “Some people go through life, never getting a diagnosis.

“Now, we have a baseline of what her condition entails. She’s non-verbal, has poor muscle tone, hasepilepsy, and dyskinetic (involuntary) movement. We don’t know the prognosis — it hasn’t been named long enough and there aren’t many case studies. We’ll just take each day as it comes.”

For the Jennings family, it’s like caring all the time for a six- to nine-month-old. “Olivia’s totally dependent, 24 hours, full-time. We get her up, change her, dress her, spoon-feed her, carry her everywhere.”

Notwithstanding this, Anita says “it’s OK — when you’re on the path you deal with it”, and describes her daughter as easy to care for. “She’s a really happy, very pleasant, placid little girl. She’s not in the least cranky. She’s a good eater. Once she’s occupied and entertained, she’s very easy to care for.

"She’s great fun, very engaging. She loves school — she’s in her second year at pre-school — and her babysitter. She loves the cat and dog at her babysitter’s. Her ability to play with toys is non-existent but she loves books and watching TV.”

Constantly “trying to balance care and normality”, Anita confides she and David wouldn’t have coped well without Jack & Jill nurse support. “They’ve been our backbone, our sanity. They’ve been there for the past two and a half years for every turn we met on the road.

They’ve backed us up and enabled us do normal day-to-day things like the week’s shopping. Olivia doesn’t have the core strength to sit in the trolley and I can’t push both buggy and trolley.

The nurses are there if Anita’s called into work unexpectedly, if she needs a haircut, if she wants to go alone to a doctor’s appointment, if the couple every now and then want to go out together for a bite to eat. “They give us that headspace, that leeway. Your social life goes when you’ve a child with complex needs. You can’t just leave her with a babysitter — she needs a nurse. They’ve covered us for funerals, weddings.

“Jack & Jill do their best to normalise family life — they’re like angels arriving in your darkest hour.” Jack & Jill organises teams to provide nursing and respite care to 350 families in their own homes — where little ones feel most safe. And there’s no waiting list.

"This is thanks to an army of more than 700 community nurses and carers across Ireland, supporting children up to age five with any one of more than 100 serious health conditions,including cerebral palsy, epilepsy, Rett syndrome, and many more.

Based in the south-east, Sheila Hayes is a specialist children’s liaison nurse with Jack & Jill. She has 30-40 families on her books at any one time. “Jack & Jill allow families down tools and walk away for a while, knowing there’s a professional looking after their child as they would.

Children with additional needs have highly complex care needs. You’re talking about a room at home set up like a hospital room.” Nurses support parents with tasks including peg-feeding, suctioning, oxygen management, medication management, monitoring vital signs, and overseeing an average of 22 pieces of medical equipment.

When a child is discharged from hospital, parents are often euphoric at getting them home. “Soon reality kicks in. A month in, they’re sleep-deprived. You start to see the burden of care. When a child has extra needs, many normal daily activities of family life don’t exist — siblings are often minded by aunts/uncles.

"It’s very socially isolating. Families put on a brave face in public. But because of Jack & Jill’s unique relationship with them, they confide in us — you see them on their down days.

“It could be feeling overwhelmed at a new piece of equipment from the disability service or the child reaching school age and it suddenly hits home — s/he won’t be going to school and they’re grieving loss of a healthy child.”

With children who are seizure-prone, parents are constantly monitoring, being vigilant every day. “The child’s running around one minute, an hour later they’re having an uncontrollable seizure, being blue-lighted to hospital. That heightened alertness is so hard to live with.”

Sheila always asks families what they need help with — perhaps deciphering medical jargon, making representations on their behalf, or trying to fit three of the child’s appointments into one day to save the family travelling on different days. “It’s all about empowering families who are in a very hard place.”

UP THE HILL FOR JACK & JILL

Jack & Jill Children’s Foundation asks the public to go ‘Up the Hill for Jack & Jill’ in support of its home nursing and in-home respite for seriously-ill children. It aims to raise €75,000 through hill walks countrywide from September 22. Register support for €16 (cost of one hour home nursing care) at www.jackandjill.ie and receive a fundraising pack. Open to all ages/fitness levels, participants can join events in Dublin/Limerick/Westmeath or organise a DIY challenge.

Follow on Instagram @jackandjillcf, Twitter @jackandjillcf, Facebook @jackandjillfoundation. #UpTheHill2019

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