Thursday, March 7, 2013

The Beginning...Again

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.
Mama at 22 weeks with A2, two weeks after Avery's first eye surgery
Auden had his first examination for cataracts at about an hour old. From the day he was born he began Ophthalmology checkups every three months. To be honest though, once Avery had her two successful lens replacement surgeries and Auden passed 19 months (the age where AC's cataracts were discovered), Brian and I began to relax.

"Driving" Papa's boat at 23 months - the same age Avery was when she had her first eye surgery

Then suddenly Little Man began to act more aggressive and wide open than normal. We attributed his behavior to the premature birth and death of our third child, Beatrice. Beatrice - who we refer to as "Baby Bee" - was born and passed 10 days before Christmas of 2010. Her diagnosis at 20 weeks gestation of severe congenital diaphragmatic hernia and congestive heart failure required me to be away from my Avery and Auden for almost four days...and I when I came home, it was without a baby sister. Everyone in our family displayed their grief in different ways. Both of the As began to have behavior problems in school, and life was kind of a mess at that point.

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.

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.
Unlike Avery Claire, who had visible cataracts that covered her pupils like a gray film, Auden's were not visible to the naked eye. And also unlike his sister, Auden's disease was found at such an early stage that he did not require immediate surgery. I feel this was both a blessing and a curse. While I didn't exactly want to go through eye surgery with my second toddler, I absolutely loathed the thought of letting the cataracts slowly leech away my son's sight while I stood by waiting.

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.

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?

***Your donations are tax deductible - and who couldn't use that?! If you're in the St. Louis area, register to come walk/run with us! Speaking of tax day, we'll be making tee shirts for those who join our team before then. ***


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