Mahli – Congenital Cateract

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Mahli was diagnosed with a unilateral cataract when she was 9 months old and had it removed just a week later. The diagnosis turned our world upside down, and to be honest, it was a hard pill to swallow at first. As any parents would, we asked the hard questions like “What did we do wrong?” and “Why did this happen to us?” I personally spent a lot of time in tears, agonising over the what ifs as the whirlwind of appointments and information swirled endlessly around me. There were many unanswered questions, such as if the cataract developed after birth or was it was present at birth and was it found in time to save her sight. In hindsight, I am so glad that it all happened so quickly, as any extra time to think about what was happening would have been almost too much to handle.

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Mahli’s first surgery to remove the cataract went well and she recovered quickly. We left the hospital the same day armed with countless eye drops and detailed instructions on post-op care. Living 5 hours away from our specialist was perhaps our biggest challenge at the time, as we had weekly appointments for almost 2 months. It felt like we were constantly in the car. Patching started immediately after surgery at just a couple of hours a day and has increased to 6 hours a day, 6 days a week.

When a contact lens arrived for Mahli, we were both nervous and excited. Nervous because we would be responsible for the insertion and removal each week, but excited because this was when we could really start working on strengthening her weak eye. As the weeks passed we got better and better with the contact which also meant the process got faster and faster, a great triumph for everyone involved!

As we attended our regular appointments, I noticed that the tone of the Doctors began to change. Positivity turned into realism and we started discussing alternate methods to get Mahli to start using her weak eye more. Her eye was not getting stronger and we needed to start acting more aggressively if we were going to help her in the long run. Mahli started on Atropine drops, but to our disappointment, we did not see the results that we would have liked. Now we are preparing for muscle surgery in June to straighten her weaker eye and hopefully encourage more use.

Some days are really hard. There are days when Mahli won’t keep her patch on, and each time she pulls it off it tears at her delicate skin leaving it sore and red. Then there are the days when her contact lens slips over and over again and I have to sit on my screaming baby girl to get it out. On those days I wonder if all our effort will even make a difference. Then we have good days; days where patching is not an issue, the contact stays in place and Mahli plays as if she is any other child. Those days make me realise that we can’t give up. In 20 years I want to be able to tell our daughter that we did everything we could for her. I see others noticing her patch, pointing and whispering, and I hope in the times ahead when she realises they are talking about her, that she is strong and confident enough in herself to not let it bother her.

Mahli is now 21 months old, and a cheerful, funny, intelligent little girl. She has endured more than I would ever wish on a child, but she has done it with a grace and bravery that is beyond my comprehension. Mahli shines through each trial and shows us what true strength is. She has many more mountains to climb, but after all we’ve been through together, I know she will conquer fearlessly what is to come. And she’ll do it with a smile.

 

 

1 Comment

  • Meg Erb says:

    What a great story! Mahli and Ruby have similar stories. I’m thrilled that other parents can get their babies contacts out easily. That’s my dream for us one day!

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