Madeleine’s journey after a diagnosis of Peters Anomaly

Madeleine was born with a rare congenital eye condition that affects less than 0.05% of the Australian population. Peters Anomaly impacts the interior chamber of the eye. It causes a thinning and clouding of the cornea and the detachment of the iris from the cornea. When Madeleine’s parents received the news, naturally they wanted to find out more.

Madeleine and mum Simone smile at the camera with a toy cooker in the background
Madeleine has a very rare condition known as Peters Anomaly

“Once you get a diagnosis, then you hunt for more information online. It’s a rare condition and we don’t know anyone else who has it. It took us a while to get a diagnosis, because it is uncommon. For us it was quite frustrating waiting to know what was wrong.”

Receiving a diagnosis of Peters Anomaly

Madeleine’s consultant is Dr Anthony Clark who specialises in paediatric ophthalmology.

As well as Peters Anomaly (link opens in new window), glaucoma was present in Madeleine’s left eye. It wasn’t the reason she lost her vision, but it did add to her complications.

Glaucoma is where high pressure causes damage to the optic nerve. The damage can result in tunnel vision.

In a normal eye, clear fluid flows from the posterior chamber, around the lens and out of the front chamber of the eye. It drains out where the cornea and iris meet. Glaucoma creates blockages in the drainage channels, so pressure builds because the fluid can’t flow out.

“The underlying intraocular pressure in Madeleine’s left eye was high and the cornea was really thin. At one point, her eye specialist considered a corneal transplant, but there were concerns the cornea would rupture because of her glaucoma and the pressure on the eye. Thankfully we didn’t have to follow this route, although she now can’t see anything out of that eye,” says mum Simone.

A lensectomy due to a congenital cataract

Madeleine has had a lensectomy in her right eye, the one that offers her sight. Her lens was removed because of a congenital cataract. In its place is a prescription contact lens – a substitute for her natural lens.

Madeleine who has peters Anomaly is smiling and is standing with a Bluey plush toy
Madeleine has adapted well to pre-kindy thanks to our support

To improve her vision further, Madeleine now wears prescription bifocal glasses that allow her to focus on objects close to her. This change in focus is normally performed by the natural lens in children. Madeleine needs glasses to do this as she no longer has a natural lens.

“I thought once she had the cataract removed, it would be an instant transformation.”

“I thought her vision would improve dramatically, but it was more gradual than that. Madeleine was about five months old when her head turned in my direction, she just looked across, and a smile broke out on her face – that’s when I knew her vision was improving.”

Madeleine started receiving support from VisAbility almost immediately after her diagnosis of Peters Anomaly.

“We’ve had the consistency of care with her Occupational Therapist, Sophie. She comes to our house and has suggested ways to help make our home more suitable for Madeleine.

We’ve added brightly coloured edging on steps, so she can see them clearer. Sophie has been involved in table-top activities with Madeleine to help her with skills needed for school,” Simone explains.

Support for Madeleine at pre-kindy

Sophie explains that she’s been working with Madeleine to improve her coordination skills, encouraging her to participate in activities for a child of her age.  Sophie’s been working on Madeleine’s counting, number and shape recognition, pencil control and pre-writing puzzles.

“Madeleine is so incredibly bright that my role is to make activities visually accessible for her through use of high contrast, bold and enlarged pictures. Madeleine takes to anything I show her in an instant and shows motivation to learn,” Sophie says.

VisAbility has also provided physiotherapy support as well as orientation and mobility instruction for Madeleine. At pre-kindy she has a one-on-one special education support teacher. VisAbility Occupational Therapist Sophie has helped to advocate her needs. High lighting and less glare are better for Madeleine in the classroom.

Vision assesments

Amy, our VisAbility Orthoptist undertakes regular vision assessments, which are a series of tests to give insights into Madeleine’s visual acuity, contrast sensitivity, and visual field.

“These tests give us detail about Madeleine’s functional vision, and how this impacts on her ability to interact with the world around her. The results help us to make adjustments for Madeleine’s environment to allow her to explore and learn independently,” explains Amy.

“They also guide the types of vision aids or equipment she may need – for example a magnifier – to help her improve her access to the visual world.”

Simone says a magnifier has been a huge help for Madeleine and even at age three, she’s using it to read books and screens.

“We were a bit overwhelmed when we first learned of her diagnosis, but she’s making good progress. She’s enjoying pre-kindy and participating in play activities such as pretend cooking. This year she’s going to become a big sister, she’s very excited and can’t wait to meet the family’s new addition.”

If you have low or no vision, VisAbility can offer support to help you lead an independent life. Our Orthoptists receive accreditation from the Orthoptic Board of Australia (link opens in new window) and can help you make the most of your remaining vision.

We also offer therapy support and children’s group programs to help you lead the life you want to.

How to get support

Please complete the form below to make an initial enquiry about the support for children with low vision we can provide. Our Client Experience Team will contact you to discuss your individual needs both now and into the future.

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