After She Was Born We Noticed Her Eyes Were Cloudy

You might think that Glaucoma is something that only happens to the elderly, but it’s not. As this young family discovered, babies can be born with it too.

Mum Ailis Shares Kitt’s Story…

We had no idea it was coming, there was nothing to prepare us for Kitt’s diagnosis. We do know now there can be a genetic link – and we have been tested and found to be both carriers of a faulty gene.

But Let Me Start At The Beginning…

I ended up having a caesarean when Kitt was born. You know how you have a birth plan and then you might as well set fire to it? Well that’s what happened to me. I was nine days overdue, she was my first baby, and I was induced. We live in country Victoria, my platelet levels were up and down, and the doctors decided I couldn’t have her in the little country hospital where we live. So I had an ambulance ride to a bigger hospital, I had 26 hours of labour then stalled out at about 6cms. There was a failure to progress, she got stuck, so they did the caesar…

My husband Mark noticed right after Kitt was born that her eyes looked cloudy, and at first doctors thought it was cataracts. The next day, brand-new dad Mark, picked up our tiny little bundle and drove her to another hospital for further testing. He called me and said the diagnosis was glaucoma. I thought, “oh no, that’s worse than cataracts.” I just burst into tears; it was devastating news. Like most people, I thought glaucoma only happened to older people, and I was shocked to discover babies could be born with it.

What Happened Next Was The Hardest Four Months Of My Life

It was brutal, really brutal. My tiny baby had her first operation at only nine days old… and within the first month of her life she had another three operations. She’d just recover from one surgery, then she had to have another one. They started off with the least invasive procedures, but nothing was really working. She also had four different eye drops to control the pressure in her eyes, and a syrup, which was a nightmare – it gave her colic and diarrhea.

Then we had a bit of a break until she was four months old. The biggest procedure involved putting shunts in both eyes, which will be permanent. After that she was a completely different baby, she could finally see us, and focus on us – I’ll never forget that feeling of her looking at my face for the first time. That was a real turning point for us. Before that, I’d just swan dived into postnatal depression.

Kitt’s specialist Dr Ruddle had diagnosed Kitt with Congenital Glaucoma, the drainage channels in her eyes didn’t develop properly, which causes an increase in pressure within the eye – this can then damage the optic nerve leading to permanent vision loss if left untreated. Glaucoma involves lifelong management and it occurs in one in every 750,000 births in Australasia.

The Pressure In Her Eyes Was So Bad It Split The Front Of Her Cornea

And in the case of Kitt’s glaucoma, it also came with some friends. Kitt also has Aniridia, she is missing part of her iris, and she has Nystagmus, an involuntary eye movement, her eyes have trouble focusing and they bounce around.

We moved to Australia from New Zealand 18 months before Kitt was born, and we were definitely in the right place for Kitt, close to the Royal Children’s Hospital, the best eye hospital in Australasia. We are grateful for that.

Dr Ruddle is an amazing man, we love him, we call him Uncle Jon. All our family are still in New Zealand, so we said to him, “you are our family now.” During the course of her treatment – Kitt was in hospital up to three times a week for surgery, follow ups and pressure checks. We practically lived at the hospital.

Kitt Is Such A Happy Child, She’s Amazing

She’s fine-tuned her other senses to make up for her vision issues, she loves to talk, and enjoys dancing and music. Kitt is shortsighted and wears glasses, she is also photosensitive to light and glare. She wears caps and sunglasses when she’s outside, at her age though (she’s not quite two), it’s hard to keep glasses on at times!

We live on a 150-acre farm, we’ve got a little play area at home that’s undercover, and there’s plenty of space for her to run around and visit the horses at dusk when there’s much less glare.

We don’t know how much vision Kitt has at this point, and we don’t know what lays in store for us. What she has is so rare, there’s really no data to guide us into the future. There will probably be more surgeries, but for now we are just enjoying our beautiful little girl.

All welcome

Join the Childhood / Juvenile / Congenital Glaucoma Support Group on Facebook.

The journey can be a stressful and difficult one for the parents, families, guardians of children with glaucoma, especially during the initial stage. It's common to feel overwhelmed or think that there is lack of support and information available for this rare form of Glaucoma.

This community support page was created by Glaucoma Australia to help connect families/parents/guardians and also individuals who have been diagnosed with or affected by Childhood Glaucoma. Its aim is to build a community for support and information sharing which may assist us in helping one another understand Childhood Glaucoma. More importantly, it aims to provide families with the moral support they may need.