BABY GIRL BORN WITH A RARE CONDITION THAT CAUSED HER BRAIN TO SWELL LEAVING HER LOOKING LIKE A TINY 𝖠𝖫𝖨𝖤𝖭

PEERING into her newborn daughter’s incubator in neonatal intensive care, Emma Morgan-Laverty, couldn’t believe her eyes.

“She looks like that wee alien baby off the Space Raiders crisps packet,” she gasped to husband Andy.

Their little girl, Myah, had suffered a major build-up of fluid around her brain when she was born in February.

And every day the couple, from Belfast, watched anxiously as it grew larger – adding about 0.5cm of fluid every 24 hours.

But against the odds, and following several complex operations, their “wee fighter” pulled through.

Now three, Emma says her daughter is “nothing short of a miracle”.

“She’s coming on leaps and bounds, she’s just started a special needs nursery and she loves it,” says Emma.

“She’s gabbling away, she’s so cheeky, and she’s walking with a frame. All things the doctors said she’d never do.”

Emma and Andy had been trying for a family for years when they were referred for a single cycle of IVF on the NHS.

“We only had one chance, but luckily for us it worked,” says Emma.

“I actually started bleeding a few weeks into my pregnancy and was convinced I was having a miscarriage but incredibly scans showed our baby was still alive and growing.

“The doctors said she had a good strong heartbeat and told us not to worry. Easier said than done of course.”

Emma tried to relax, but then at her 20-week scan she was dealt a devastating blow.

The couple were told that they were expecting a little girl, but that her head seemed larger than usual and some parts of her brain appeared to be missing.

They were referred to specialists at Belfast’s Royal Victoria Hospital and after further scans they were told their unborn daughter had hydrocephalus, which meant a build-up of fluid around her brain.

It also looked like she was missing part of her brain called cerebellum, which controls things like posture, balance, coordination and speech.

“Listening to this, I felt like I was in a fog,” Emma recalled.

“Thank God Andy was with me to take in the detail. They said our wee girl would have severe disabilities.

“She might never walk, talk or go to school.”

Back home Emma ploughed all her energy into researching the conditions.

By the time she gave birth in February she thought she knew what to expect.

She said: “I had a C-section at 35 weeks. We’d been told our daughter – who we’d named Myah – would be passed to us for cuddles and a feed before being taken to NICU to be prepared for surgery.

“She’d need a shunt fitting into her head soon after birth to drain the fluid build-up.

“Myah emerged weighing 7lbs and mewing loudly. I felt a huge rush of happiness as she was passed into Andy’s arms.

“The nurse gave him a bottle to feed her. But suddenly things started to become very difficult.

“Myah’s face crumpled and she desperately struggled for air as milk came out of her nose and mouth.”

Suddenly there were four doctors crowded round the infant and Myah was taken away as her parents asked what was happening.

It transpired the newborn’s oesophagus – the pipe that connects the mouth to the stomach – was in the wrong place.

Instead of being connected to her stomach it was attached to the side of one of her lungs.

Its positioning was extremely serious and she needed immediate surgery to correct it, so the shunt would have to wait.

By the time she was two hours old Myah was in surgery undergoing a gruelling four-hour operation.

Time seemed to stand still as her parents waited for news.

“Finally we were allowed to visit her in recovery,” says Emma.

“She looked so vulnerable surrounded by beeping machines and she had a feeding tube running straight into her tummy.

“It was also painfully obvious that her head was too big. But when I asked about the shunt the consultant explained she was too unwell for surgery.”

For the next four weeks it was a deeply worrying waiting game.

The fluid continued to build around Myah’s brain but each day surgeons said she still wasn’t strong enough for the operation to reduce the pressure.

“Every day her head grew bigger and bigger,” says Emma.

“One morning I leaned over her incubator and gasped in 𝗌𝗁𝗈𝖼𝗄. She looked like the alien off the front of the Space Raider crisp packets.

“I was terrified she’d suffer lasting brain damage.”

Eventually Myah was strong enough to undergo more surgery and her shunt was fitted.

In March the couple were finally able to take her home, although she was back in hospital in May for more surgery on the shunt.

“Since then our wee baby has defied all the doctors’ expectations,” says Emma.

“She’s now a happy and thriving three-year-old.

“She loves singing along to nursery rhymes like Hickory Dickory Dock and Frozen videos on YouTube – so much for not being able to talk.

“She’ll never be able to spit or swallow because she has a condition called tracheoesophageal fistula, which means she is now peg-fed directly into her tummy.

“She’s known for her sunny smile and she’s such a joker, always trying to make us laugh.

“Every time I look at my wee girl I’m just so thankful to be a mum.”