Features / children
How one hospice care charity is bridging the care gap for children
When Claire Bergeron gave birth to her baby girl Anouk ten years ago on a mild day in November, nothing could have prepared her for what was to come.
The pregnancy had been smooth and uneventful, but at 39 weeks, Claire’s bump stopped growing.
It was discovered she had developed pre-eclampsia, a condition that is usually mild but can severe complications if it develops.
is needed now More than ever
As a result Claire’s labour was induced, and Anouk was delivered by an emergency caesarean.
Anouk loves animals and wildlife.
Though born full-term, at just two kilos Anouk was tiny, required oxygen and couldn’t regulate her blood sugar.
She was rushed to the neonatal intensive care unit (NICU) and within hours, doctors noticed some unusual features: an extra finger and toe.
Genetic tests were ordered, and at just a few days old, Anouk was diagnosed with Trisomy 13, also known as Patau syndrome – a rare genetic disorder that is. caused by having an additional copy of chromosome 13 in some or all of the body’s cells.
Patau’s syndrome affects about 1 in every 4,000 births.
Claire remembers that moment vividly:
“We were taken into the ‘bad news’ room.
“The consultant was cold and blunt. We already knew what they were going to say because we’d been googling it the night before. But hearing the diagnosis confirmed… it was devastating.”
“It was such a scary, overwhelming time. But I just kept thinking: what can I do for her now? I focused on expressing milk. That was the one thing I could do.”
After a month in hospital – long, uncertain days of tube feeding, low blood sugars, and worry – all Claire wanted was to be home for Christmas.
And four days before they finally made it.
And so began their journey with Jessie May, Claire says: “We were introduced to Jessie May just before we left hospital.
“When they mentioned children’s hospice to us, it was so scary and I remember thinking it was strange – the idea of a nurse coming into your home.
“But from the moment they arrived, we knew it was something special. The kindness… I’m lost for words really,” Claire explains tearfully.
“They fought over cuddles.”
For ten years, Jessie May nurses have been by Anouk’s side – and Claire’s. From weekly visits in those early months to regular check-ins today, the support has been transformational.
“In those first weeks at home, having someone come every week gave me time to breathe. It was just three hours, but it meant I could go for a walk, clear my head, be me for a moment. And the nurses didn’t just care for Anouk – they loved her.”
Claire laughs as she recalls the nurses “fighting over cuddles” and describes their care as instinctive and joyful:
“They weren’t just nurses. They were motherly, warm, playful. You don’t do this job unless you really care. And you could tell – Jessie May nurses genuinely love children.”
Anouk’s journey hasn’t been easy.
In addition to her condition, she’s lived with seizures since she was nine months old, chronic kidney infections, severe reflux, and ongoing feeding challenges.
She now has a gastrostomy tube and a bladder stoma. The family has been in and out of hospital more times than they can count.
“You just keep going. You adjust. You learn to manage things like seizures – even when they’re terrifying. But it takes a toll.”
With no extended family nearby and only limited support from stretched social services, Jessie May remains their only source of respite.
“Jessie May is our only consistent help. They come during school holidays now as well, and I can go for a walk, go shopping – just do something for myself. It means everything.”
This story is part of Bristol24/7’s charity partner Jessie May campaign ‘Your Community Needs You.‘ The emergency appeal, which ends July 14, is to fill a £300m funding gap to continue to provide crucial care to children and young people in Bristol and the surrounding areas.
How to get involved:
- Donate at we-need-you.jessiemay.org.uk/
- Be a digital champion as part of their matched campaign; get involved and share their story with your family, friends and colleagues. All funds raised will be matched funded. Email them via appeal@jessiemay.org.uk
- Fundraise: Host an event, take on a challenge, or rally your school, business or community group
- Give regularly: Set up a monthly donation to provide reliable ongoing support
- Write to your MP and share Jessie May’s story on social media
All photos: Family
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