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Luka's story - Premature birth and NEC

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Luka's story

Premature birth and NEC

“As a first time mum, I had no idea what labour felt like, no idea what to expect. We hadn’t even finished antenatal classes,” says mum-of-one Lucy whose son Luka was born at just 30 weeks.

Lucy experienced an easy pregnancy until one night, ten weeks before her due date, she started to feel uncomfortable. Realising the sensation was coming in waves, she called the hospital.

“I wasn’t seen straight away,” Lucy remembers. “By the time they examined me I was 4cm dilated. An hour later, I was 7cm. They gave me drugs to try and delay labour but they didn’t work.”

Just 12 hours later, baby Luka was delivered weighing 3lbs 9oz and was immediately taken to the Neonatal Intensive Care Unit (NICU).

After an initial scare when Luka became very ill at just five days old, he seemed to thrive, despite being so very small and vulnerable. But, aged three weeks, Luka became extremely poorly: “He was anaemic and had a blood transfusion. I knew it was serious,” Lucy says.

Luka was very sick. His tummy was extended, and the doctors felt they must operate straight away to find out what was wrong.

Mum Lucy with baby Luka in hospital

Luka’s surgeon detected the potentially life-threatening bowel disease necrotising enterocolitis (NEC). 10cm of Luka’s bowel was removed, and a stoma was formed to take care of his body’s waste.

To Lucy and her husband Kyle’s immeasurable relief, the medical team was confident that Luka would make a good recovery. The new parents learned stoma care so they could take Luka home. Further surgery to reverse his stoma was required, but thankfully all went well.

Now, aged one, Luka is a truly thriving: “Luka is the most clever, funny and energetic baby ever!” says his proud mum.

Luka aged one with mum and dad


Premature birth can happen to anyone – there’s just not enough research, yet it’s one of the biggest killers of babies in the world.

With Luka’s eight weeks in hospital and the terror of deadly disease now behind them, Lucy and Kyle are focusing on the future. Aware that Action has funded a wide range of studies into premature birth and NEC, fundraising for the charity is firmly on Lucy’s agenda: “When Luka was in hospital there were just so many mums who never got an answer. It does make me afraid to become pregnant again. Premature birth affects the whole family – grandparents too,” she reflects. 

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