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Raising Awareness of Childhood Glaucoma

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Stories

Scarlett

rsloan
4 February 2021

My daughter, Scarlett, was born with bilateral congenital cataracts (BCC).  I knew to have her checked after birth due to myself having been born BCC- it runs in my family from my fathers side.

At 10 weeks she had surgery on both eyes to remove the cataracts. I was extremely stressed and worried, of course, and was concerned of what lay ahead.

We would go on to inserting and removing contacts in both eyes daily, which is still a struggle for me at 15 months.

At her 3 month post op visit her pressure in her right eye was extremely high- in the 40s.

Prior to appointment I had noted her right eye was larger than the left; however, the doctor had informed us it would always look and be a bit larger due to the stretching of the iris that occurred during the cataract removal. So I figured it was just that as well as possibly some strabismus occurring. I had NEVER contemplated she would be diagnosed with glaucoma. I have glaucoma but I was diagnosed when I was 12.

So, we had surgery for her by the next week due to the urgency. She had a goniotomy done first and several months later a trabeculomoty due to the goniotomy not being successful.

In November of 2020 her pressure was again quite high- close to 30 which was not ideal for having had 2 procedures already. She was prescribed diamox liquid medication and a new eye drop to buy time through the holidays and COVID.  We went back in January and her pressures were excellent- low teens so the diamox was stopped and she is on 3 drops, 3 x a day. If the pressure does not stay down we will likely need the surgery where a tube is placed in the eye to assist with drainage.

We are constantly fearful of if her pressures are up. There does not seem to be a “reason” specifically for why this has occurred for her. She is the doctor’s first patient to develop glaucoma after cataract surgery- which we know is a risk of having cataracts / surgery, but it is still frustrating and overwhelming.

Since I have it and my father and sister have it, I know a part of it is inherited. However, the mystery with our family is that my sister and I inherited it from our father, who inherited it from his father. My father did not have sons, but my sister and I do and our sons do not get the cataracts or glaucoma (thus far ) but our daughters do get the cataracts (though my daughter is the first in the family to get glaucoma within the first year of life ).

I would love to learn more about the disease, to discover if there are anything other contributing factors, that influence it or that can help decrease it. I’d love to offer support to others as well as this journey has been very emotional and hard.

This story was told by Scarlett’s mother Michelle Juhasz.

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