Our baby was born looking like Space Raider alien after rare condition caused her brain to swell
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 massive build-up of fluid around her brain when she was born in February 2018. And every day […]
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 massive build-up of fluid around her brain when she was born in February 2018.
And every day the couple, from Belfast, watched in anguish as it grew larger – adding about 0.5cm of fluid every 24 hours.
But against the odds, and following several high-risk 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, 38.
“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, 35, had been trying for a family for years when in 2017, 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 body 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 be severely disabled.
“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 2018 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 prepped 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 go badly wrong.
“Myah’s face crumpled and she desperately gasped for air as milk spurted out of her nose and mouth.”
Suddenly there were four doctors crowded round the infant and Myah was whisked 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 stuck to the side of one of her lungs.
Its positioning was lethal and she needed immediate surgery to correct it, so the shunt would have to wait.
What is hydrocephalus?
Congenital hydrocephalus is when a baby is born with excess fluid in their brain.
It can be caused by a condition such as spina bifida, or an infection the mother develops during pregnancy, such as mumps or rubella (German measles).
Many babies born with hydrocephalus have permanent brain damage.
This can cause several long-term complications, such as:
- Learning disabilities
- Speech problems
- Memory problems
- Short attention span
- Problems with organisational skills
- Vision problems, such as a squint and vision loss
- Problems with physical coordination
- Epilepsy
Hydrocephalus can usually be treated using a thin tube (shunt) that’s surgically implanted in the brain and drains away the excess fluid.
By the time she was two hours old Myah was in surgery undergoing a gruelling four-hour op.
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 poorly for surgery.”
For the next four weeks it was a terrifying waiting game.
The fluid continued to build around Myah’s brain but each day surgeons said she still wasn’t strong enough for the op 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 brain damage.”
Eventually Myah was strong enough to undergo more surgery and her shunt was fitted.
In March 2018 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 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.
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“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.”