After 487 days in hospital, 16-month-old Ellie, born weighing less than a bag of sugar, was finally able to go home just in time for the big day.
Ellie’s mother Sarah Haskell, from Brighton, said: “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.”
Ms Haskell 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 Ms Haskell went into spontaneous labour. Ellie was so tiny and so fragile, that survival seemed impossible.
“She was taken straight to the Trevor Mann Baby Unit,” said Ms Haskell.
“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.”
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,” said Ms Haskell. “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.”
After recovering from the tracheostomy surgery, mother and daughter were able to return to the Royal Alexandra Children’s Hospital in Brighton to focus on rebuilding Ellie’s strength in preparation for discharge.
When it seemed like plans to get Ellie home for Christmas might not be possible after all, Ms Haskell remembers the team refusing to give up.
“We were told that we’d be in hospital for Christmas,” she said. “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.”
Christmas Day was filled with “presents, food and chaos”, said Ms Haskell.
“Nothing is more meaningful than having Ellie there with us,” she said.
Despite the huge amount of joy, it has also been a challenging time getting used to their new normal.
“Leaving the safety of the high dependency unit has been extremely hard,” said Ms Haskell.
“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.”
Since leaving the hospital, Ms Haskell 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.
Ellie is also showing a keen interest in percussion instruments.
“I’ll probably regret it, but Father Christmas has a drum on his list,” said Ms Haskell.
“Every music class, that’s all she plays with.”
Ellie remains fragile, with big milestones ahead – building lung strength, reducing ventilation, and one day, perhaps, removing her tracheostomy. But Ms Haskell is hopeful and Ellie continues to amaze everyone with her progress.
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