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| Our Three As! |
Like so many young couples, Brian and I did not imagine that anything would stand in the way of our plans. Before getting married we talked about having a large family - three to four kids. Our only real concern was that fertility might be an issue (stop giggling). However, once we got pregnant with Avery Claire - and then 15 months later, Auden - we stopped being concerned. Hey, this was easy! Enter, Congenital Cataracts.
At one of Avery's post-op Ophthalmology appointments, we asked the surgeon if our future children might develop congenital cataracts. You can imagine our fear when he speculated that this was a genetic condition and that Avery should undergo testing...after all, I was 22 weeks pregnant with Auden at the time. Since my sweet girl displayed developmental difficulties in addition to cataracts, we took her for genetic testing. They found that her visual impairment was a dominant trait passed down by poor Brian, and calculated that any children we had carried a 50% risk of developing the disease. There was no way of knowing whether my fetus had inherited cataracts, but according to the DNA results it was pretty much a coin toss.
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| Mama at 22 weeks with A2, two weeks after Avery's first eye surgery |
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| "Driving" Papa's boat at 23 months - the same age Avery was when she had her first eye surgery |
That Spring our spirits improved. Unbelievably, I was expecting again! For obvious reasons cataracts were not our main worry during Pregnancy #4. Then we took our two As to the Ophthalmologist for their regular checkups. I wouldn't say we were shocked, but it was still a little surprising when the other shoe dropped. Dr. Lambert found patchy areas of cataracts in the posterior lens of Auden's right and left eye. To illustrate his sight at that time, imagine looking through a window covered with grey tennis ball-sized dots. Your entire view is not occluded, but you are not taking in all the visual information you should be. Now imagine being 2 years old and trying to make sense the world. Even healthy preschoolers have difficulty.
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| AC (age 4) gets a follow-up check up while Auden (age 2) waits in his stroller. This was the day his cataracts were discovered. |
You see, the most unsettling thing about my children having cataracts was not that they needed surgery. And - once the surgeries were successful and neither child went blind - I accepted the inevitable teasing they'd endure for wearing bifocal glasses. The unnerving part of dealing with pediatric visual impairment is worry over the rapidly developing brain. How is a baby/toddler/preschooler supposed to learn when they can't see what they're being taught? They cannot verbalize what they are missing because they are 1) too young, and 2) don't know! Kids are amazingly adaptable and they do not always acknowledge they are having difficulties. As a mother I continually question my childrens' cognitive development. I am scared of how the lapse in visual processing will affect their futures. I will always wonder what knowledge Auden lost out on while we waited for his cataracts to get worse.
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| Mama and Auden (age 3) two months before his surgery |
By the time Auden would have his surgery at age 3 1/2, the back of each eye was almost entirely covered with the occlusive film of cataracts. Interestingly enough it was still not visible to an untrained eye. The only blessing I've found in the situation is that, because of Avery, Auden was monitored for cataracts from birth. I seriously doubt his would have been discovered early enough had we not been prepared for the risk.
I truly wish we had lived in St. Louis when Auden began losing his sight. Through their Delta Gamma Center for Children with Visual Impairments, children from Birth to age 3 receive low-cost to free visual therapy - therapy that Auden would have qualified for, and therapy his sister Avery was lucky enough to receive. No such specialized early visual education is available here in Middle Georgia...although God knows we need it.
The lack of therapy and support for Auden's visual impairment reminds me of how fortunate we were throughout Avery's ordeal. This is why I remain passionate about raising funds for the DG Center. Although we have moved away from Missouri, I still feel obligated to support the children that are able to receive help. And this year in particular, I want to raise funds to honor my sweet boy's quiet struggle. Will you help me?
XOXO
Erin
