“Jessie May has been a lifeline. Truly.” – Claire, Anouk’s mum
When Claire gave birth to her daughter Anouk on 24th November 2015, 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. After developing pre-eclampsia, she was induced, and Anouk was delivered by emergency caesarean section.
Though born full-term, Anouk was tiny – just two kilos. She needed 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, life-limiting chromosomal condition.
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 on 21st December, they finally made it. That’s when they met Jessie May.
“We were introduced to Jessie May just before we left hospital. When they mentioned children’s hospice to us, it was so scary; 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 with tears in her eyes.
“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.”
