Born at just 23 weeks and weighing only 444 grams, Ellie has defied the odds and has celebrated her first Christmas at home.
Christmas is often a season of sparkle and festivities, but for Sarah Haskell and her 16-month-old daughter Ellie, this year is all about simple pleasures and home comforts.
After 487 days in hospital, Ellie – born at just 23 weeks and weighing less than a bag of sugar – is finally back under the family roof, waking up in her own cot.
Sarah describes what this means: “It’s quite possibly the best feeling of my entire life, getting to go in and see her in the night – being a normal mum. It’s everything.”
But she’s also had a challenging time getting used to their new normal. “Leaving the safety of the High Dependency Unit has been extremely hard” Sarah explains. “I’m constantly in ‘fight or flight’ mode as Ellie’s situation can change so quickly. Plus, your own house suddenly becomes filled with machines and monitors.”
A fight for life
Sarah was working as an estate agent and had a smooth pregnancy until 17 weeks, when her waters began leaking. Four weeks later, a severe bleed led to an admission at the Royal Sussex County Hospital in Brighton. At 23 weeks Sarah went into spontaneous labour. Ellie arrived so tiny and so fragile, that survival seemed impossible.
“She was taken straight to the Trevor Mann Baby Unit,” Sarah recalls. “For six months, that was our world. Ellie was the sickest baby in the room every single day. She had emergency bowel surgery in Intensive Care, cardiac arrests, and there were countless times where we were told she wouldn’t make it.”
Every day was a battle to make it to the next sunrise. Eventually, a tracheostomy at the Evelina Children’s Hospital in London gave Ellie the chance to breathe more easily and thrive.
“I said no to the tracheostomy at first,” Sarah admits. “But now I can say it has been the best decision of our lives. The moment she woke after surgery, she was clapping and smiling – it was so nice to see her free of masks and nasal cannulas. Her joyful personality has shone through ever since.”
Preparing for home
After recovering from the tracheostomy surgery, Sarah and Ellie were able to return to the Royal Alexandra Children’s Hospital in Brighton to focus on rebuilding her strength in preparation for discharge.
Sarah was elated to be back: “I cried with happiness. When you find a unit that not only makes your child feel safe, but you as a parent too, it’s so rare. Everyone there played such an important part in our journey – the nurses, consultants, dietitians, physios, students – they all became like family.”
When it seemed like plans to get Ellie home for Christmas might not be possible after all, Sarah remembers the team refusing to give up:
“We were told that we’d be in hospital for Christmas.” Sarah laughs: “I even put up a full-size tree in Ellie’s room!”
“But the clinical and discharge teams fought day and night for us. I’ve got emails from them at 2am – they went above and beyond to help arrange the care we needed for Ellie to live at home.”
Strength and solidarity
For Sarah, the hospital wasn’t just a place of care – it nurtured friendships that were a lifeline through the darkest of times.
She reflects: “My life turned on its head and the only people who truly understood what I was going through were the other long-term mums,” she says.
“We held each other up when things got really tough. It’s like a club you never want to join, but you couldn’t survive without it. Even now, we’re still in touch. They get it.”
One of these families includes a little boy who was born before Ellie and stayed in hospital even longer. He was also discharged earlier this month.
Sarah shares the poignancy of this moment: “It’s so lovely we get to have our babies home – finally. As parents, it’s all we hoped and prayed for. I’m sure we’ll be swapping pictures on Christmas day.”
A Christmas like no other
So, what does Christmas look like for Sarah and Ellie this year? “Presents, food and chaos with the family – a traditional but homely day. Nothing is more meaningful than having Ellie there with us,” Sarah says.
Since leaving the hospital, Sarah is enjoying getting out for daily buggy walks where they live on the outskirts of Brighton. Ellie has even been attending baby classes – something that seemed inconceivable not too long ago:
“It’s only been a few weeks, but we’ve been going to ‘Baby College’ which focuses on her development. We’ve even seen Father Christmas – and soon she’ll be crawling.”
Ellie is also showing a keen interest in percussion instruments: “I’ll probably regret it, but Father Christmas has a drum on his list”, Sarah laughs. “Every music class, that’s all she plays with.”
Looking to the future
Ellie remains fragile, with big milestones ahead – building lung strength, reducing ventilation, and one day, perhaps, removing her tracheostomy. But Sarah is hopeful, and Ellie continues to amaze everyone with her progress.
Has 487 days in hospital changed Sarah? “Definitely. You become more resilient and gain real perspective – with less patience for the things that don’t matter. But I’d do it again in a heartbeat for her”, she says.
If there is one piece of advice Sarah could give to another Mum in the same situation; it would be to never give up:
“Even in the darkest hours, keep fighting. To think I got to take Ellie home in the end – it’s made every tear in the middle of the night worth it.”
Looking ahead to 2026, Sarah dreams of summer days spent outside with her daughter and maybe even a staycation in the UK. If one thing is for certain, nothing will hold them back from embracing life and joy together – one day at a time.
Wishing Sarah and Ellie a truly magical Christmas! And a heartfelt thank you to all our UHSussex colleagues for your incredible care and support for Ellie.