Family's fight after baby's heartbreaking diagnosis

'When I saw her, I knew something wasn't right, I just didn't know the extent of it.'

LOVE AND CARE: Rachel and Shea Edwards with their daughter Mia. Mia has a rare brain condition that comes with a life expectancy of seven-10 years. Picture: Sue Louise Photography

AS RACHEL and Shea Edwards headed to St Andrew's Hospital to have their first child, they were blissfully unaware of the news they would soon receive.

Mrs Edwards gave birth to her daughter Mia through a scheduled c-section in June. The moment she first laid eyes on her daughter, she knew something wasn't right.

"You just know when you see your baby if something is wrong. When I saw her, I knew something wasn't right, I just didn't know the extent of it," she said

Mia went through a myriad of tests to determine her diagnosis before Rachel and Shea received the news that would turn their world upside down.

"Her paediatrician looked her over. She had some bloods done, she had a CT scan and an MRI done," Mrs Edwards said.

"She's just this tiny little baby and she's going into this huge machine.

"We finally got the proper diagnosis after two days."

Mia was diagnosed with microlissencephaly, a rare brain condition that comes with a life expectancy of seven-10 years.

"The doctor went through everything that it includes, so it can include a wheelchair if she becomes a quadriplegic, she won't be able to use her arms and legs because her brain just won't be able to tell her what to do with them," she said.

"The worst part for us was the life expectancy."

Rachel and Shea Edwards with their daughter Mia. Mia has a rare brain condition that comes with a life expectancy of 7 to ten years. Picture: Sue Louise Photography

The diagnosis came as a shock for the young parents, who had previously undergone scans to rule out several conditions.

"That was really hard, mostly because when I hit about 20 weeks, my obstetrician was doing scans every three weeks or so because her head was coming up smaller," Mrs Edwards said.

"She sent me to another obstetrician who has been an obstetrician for about 40 years now and can actually do the internal scans.

"In his report, it even came up with not consistent with microcephaly, which is the small head.

"That was about three weeks before my scheduled c-section."

Doctors are unable to determine exactly how or the extent of which this condition will affect Mia's life at this stage.

Babies diagnosed with the condition are born with a smaller head and a smooth brain surface. It's a one-in- 100,000 condition.

"When you don't have those ridges in the brain, all the neurons and the messages that travel through those ridges, they end up confused and they can't communicate with each other about where they need to go," she said.

"She also has cerebral palsy because of this.

"It's very draining emotionally, and every day is a different day."

Mia was also suffering seizures and is taking medication in a bid to prevent them.

"They can actually die from seizures, so the more it's controlled, the better," Mrs Edwards said.

"We're just making sure that we are giving her our attention, love and care that she needs."

All the while, Mia's dad has worked hard to complete his nursing degree, juggling assignments and placements with caring for his new daughter.

"We rely on each other a lot emotionally," Mrs Edwards said.

"We've really only got each other who knows what we're going through"

Mrs Edwards has launched a Facebook page to share her journey with Mia.

You can keep up to date with Mia's progress by searching My life with Mia on Facebook.

Originally published as Family's fight after baby's heartbreaking diagnosis