'Started to think something was wrong': Shocking reason baby Marlee never looked at her mum

Sarah McVicker first feared something was wrong with daughter Marlee when she didn't appear to look at her while breastfeeding.

McVicker, of Logan City, about 30 minutes south of Brisbane, already had an older son, Tyren, who has autism, and was aware of the signs to look out for.

"With Marlee, I was really looking for a breastfeeding connection I didn't get with my son," McVicker recalled to 9honey.

"I started to notice she wasn't fixing her eyes on me when feeding."

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While McVicker at first thought the lack of eye contact might have been an early sign of autism, as the weeks passed, she noticed Marlee's eyes seemed cloudy.

She still wasn't looking at her mum or anything around her, and if there was a loud noise, she would startle easily.

"I started to think maybe there was something wrong with her sight and she might need glasses."

McVicker took her concerns to her GP, who suggested she visit one of Queensland's Child and Baby Health Clinics for a check-up.

It wasn't until Marlee missed an important milestone regarding her vision at a follow-up appointment when she was four months old that McVicker's concerns were finally taken on board.

She was told to take Marlee to the emergency department at Queensland Children's Hospital in Brisbane, where she was examined by an eye specialist.

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Hours after arriving at the hospital, McVicker received devastating news.

"I was told by an ophthalmologist that the optic nerves did not connect to her brain, [and she was] completely blind," McVicker said of the earth-shattering diagnosis.

"It just happened so quick. I was at the hospital alone with Marlee.

"I can still picture myself, where I was standing, when they told me. It was heartbreaking."

Marlee was admitted to hospital and underwent an MRI the following day, which also showed she was missing some of her brain structure in an area of the brain called the septum pellucidum.

Marlee was diagnosed with septo-optic dysplasia, a rare, genetic condition affecting about one in 10,000 births.

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According to the Great Ormond Street Hospital in London, there are three main problems associated with the condition. Only about one-third of people diagnosed with the congenital condition will have all three, which include optic nerve hypoplasia, midline brain abnormalities and pituitary gland abnormalities.

At this stage it is not known if Marlee suffers any pituitary gland abnormalities, which can cause growth problems and diabetes.

McVicker said the diagnosis and ambiguity surrounding Marlee's long-term prognosis left her reeling and fearful for her daughter's future.

"I went through a period of immense grief. I grieved the life that I imagined my little girl to have," McVicker said. 

"Those early days of her diagnosis were scary. Like most people, I didn't know much about vision impairment, how to treat it or what Marlee's life outcomes would look like. 

"As a parent you have all of these dreams for your child, but I had to accept that not all of these dreams will come true."

Learning she was now the mother of not one, but two children with disabilities, was also tough on McVicker, although she thinks her experiences with her son prepared her to "parent in an alternative way."

After three days in hospital, they were sent home.

Luckily for McVicker, she was referred to Vision Australia, which is Australia's leading provider of services, equipment and training for people who are blind or have low vision.

An occupational therapist [OT] from the organisation visited them at home within days.

"[The OT] was amazing. I was in fight or flight mode. She put everything in front of me so I could access the information I needed," she said.

"Not only did they provide Marlee with services like occupational therapy and physical therapy, but they also connected me with a psychologist who helped me through the grieving process."

She was also put in touch with Narbethong State Special School for children with vision impairment.

They started attending a weekly playgroup straight away then a pre-prep program twice a week where Marlee has been gradually introduced to the basics of reading and writing Braille.

She already has a Perkins Brailler machine to write Braille, and McVicker uses it to label items around the home for Marlee.

Both organisations were also on hand to help Marlee transition to mainstream preschool during 2024.

"It was their first time having a blind student and they have been amazing," McVicker said.

Marlee will attend a mainstream public school from next year, something that initially worried her mum.

"I was terrified of putting her in this big environment where she could not see anything," she said.

But fortnightly visits to the school over the past two terms has helped prepare both Marlee and her mum for the transition.

At school, she will be supported by a Queensland-government appointed advisory visiting teacher who will attend each week.

"I know all these people are waiting to support Marlee [and] they are wanting her to thrive," McVicker said.

"They are adjusting the curriculum to support her. They want to change the school to suit her, not change her to suit the school."

Marlee will also use a cane to help her get around.

"She got her first cane as soon as she could stand. It was a tiny little pink one. She would not have been one," McVicker said.

"Her confidence grows when she uses her cane. Without her cane she will just stand there [in one spot] but when you hand her the cane you can see she is ready to go."

Now five, Marlee is under the care of an endocrinologist and an ophthalmologist at Queensland Children's Hospital, who continue to monitor her condition.

She continues to work with a Vision Australia OT on life skills such as dressing herself and packing her back for school. A psychologist is also on hand.

While McVicker once feared for her daughter's future, she said it was hard to believe how far Marlee had come.

"She is so confident. When she meets someone she says, 'I am Marlee, I am five and I am blind. This is my cane, it helps me get around,'" her proud mum said.

"She is a curious, adventurous little girl [who is] the life of the party. Her bucket is always full. She is happy; she loves to sing and dance.

"I don't think anyone or anything will ever stop her."

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Marlee is one of thousands of Australian children who are supported through Vision Australia's Life Ready program, which gives children who are blind or have low vision the tools to achieve meaningful community participation and, eventually, employment.

Each year, Vision Australia's Carols by Candlelight raises much-needed funds to provide vital services such as the Life Ready program for its youngest clients.

David Campbell and Sarah Abo return to present Vision Australia's Carols by Candlelight presented by AAMI live from the Sidney Myer Music Bowl on Tuesday, December 24 at 8.00pm on Channel 9 and 9Now

Tickets to the Sidney Myer Music Bowl are on sale now and can be purchased via www.carolsbycandlelight.com.au

You can listen to the simulcast on 2UE 954 in Sydney, 4BH in Brisbane and Magic 1278 in Melbourne. Vision Australia Radio provides professional audio description through their local stations and online.  

Replays will be broadcast on Christmas Day at 1pm on Channel 9 and 7pm on 9Gem.