Wow. I finally have something “important” enough to blog about. Thanks Ann for the opportunity! I don’t think I can express just how much I truly appreciate it.
First, an introduction. My name is Stacie. I’m a married working mother of 3 beautiful children. Aaron is 14 and has Aspergers (high-functioning autism), Jamie (my girl) is 13 and was recently diagnosed with bi-polar disorder, and Conner, my 3 year old, was recently diagnosed with “late-onset” primary congenital glaucoma in his right eye. It’s Conner’s challenge in life that brings me to this blog.
If you are anything like me, you have googled and googled and googled until you can’t google no more, trying to find someone who is going through something at least half way similar to what you are. Raising a child with Congenital Glaucoma.
Guh. Just the sound of it. I’ve noticed that medical professionals say “Congenital Glaucoma” in the same tone of voice as they say “Cancer.” I know it’s not cancer. It’s not life-threatening, but it’s very scary all the same.
What is Congenital Glaucoma? How often does it happen? What causes it? Is it genetic? Can it be cured? How many surgeries will he/she have to go through? Will there always be eye drops? Will my baby go blind? All questions I asked myself the first time I sat down at my computer to find out all I could find about Congenital Glaucoma. It’s my hope I can share some of the things I’ve found, some of the experiences I’ve had, and some of the knowledge I’ve gained, plus help parents of kids with Congenital Glaucoma network and provide each other with support.
Anyway, I’m getting ahead of myself. I’d like to start off telling Conner’s story so far in little segments. I believe there are huge lessons in the little segments that may help some parents with early diagnosis, and early diagnosis is the key to less vision loss.
So, I’ll start with Conner’s beginning. Conner is my “miracle” baby. He’s the product of 7 years of unexplained infertility, one miscarriage, and lots and lots of prayers. I teared up the first time I felt him kick inside my tummy. I relished every plate of nachos I craved the entire time I was pregnant with him. I didn’t care about the baby weight. I didn’t care about the pregnancy symptoms, the stretch marks, and the other unpleasant parts of pregnancy. All I cared about was getting Conner into this world as healthy as possible. I ate right. I exercised (unheard of for me). I gave up caffeine. I got plenty of rest. I drank tons of water. I didn’t touch tuna fish or the cat litter box, and if a truck with bad exhaust was in front of me, I changed lanes just in case. In short, I did everything I could to get him into this world happy and healthy.
I vividly remember the first time I heard him cry. I sobbed like a baby. I think I may have cried louder than he did, I was so happy. There he was. 10 fingers, 10 toes, staring at me with his halo of blond hair and his beautiful blue perfect eyes. I was the luckiest person in the world. He got a 9 on his Apgar. He was acing tests already. I rejoiced. I paid for all the extra genetic tests offered at our hospital. He aced all those too. What a kid!
We took him home from the hospital. He was the perfect baby. He rarely cried. He slept through the night at 2 months. We’d wake up, and he’d be laying in his crib giggling and cooing, starting the day off right. He has the cutest dimples.
We took him to every well-baby visit, faithfully. 2 months, 4 months, 6 months, 9 months. Each time, the pediatrician checked his ears, his eyes, his mouth, his groin, and pronounced him as healthy and perfect as we knew he was. We were enamored with our sweet natured little man. I mean, look at that face? How could you not be? 🙂
For his 1st birthday, his grandparents came all the way from Iowa to Texas to visit. After a couple of days, Grandpa said “You sure can pick Conner out of a crowd. He’s the one with one eye bigger than the other.” I smiled at father in law and told him that having the appearance of one eye larger than the other was actually an eyelid placement thing that runs in my family. We all had a nice chuckle about my family (another story for another blog) and ate cake.
Conner, of course, got to smash one of his very own, and he was a master at it.
Notice how, in the picture on the right, the iris (blue part) and pupil (black part) of Conner’s right eye is larger than his left. That’s called buphthalmos – or Ox eye – and is a classic sign of congenital glaucoma. In retrospect, I can look at this pic and see the signs of congenital glaucoma. At the time though, I had no clue. I mean, pediatricians are supposed to catch that kind of stuff, right?
We cleaned off all the cake in the bathtub, opened presents, and went on with life. Conner grew. He learned to catch a ball really early. We were (and still are) proud. He continued to be an easy going little guy. We went to our 15 month and 18 month well baby exams, and Conner passed them with flying colors. Life went on, and it was wonderful. We took Conner to the pumpkin patch (see gratuitously cute pumpkin patch picture below), we went trick or treating, we had his first major Christmas. If Conner shielded his eyes from the Texas sun, we didn’t think anything of it. So his right eye teared up a little more than the other one when exposed to light. That was no big deal, right? Or was it? Surely if this wasn’t normal, the pediatrician would have said something when we joked about Conner needing sunglasses, wouldn’t he?
Shortly before Conner was 2 years old, we made a cross-country move, and moved to Idaho, where I’m originally from. No surprise to me, the sun shines just as bright in Idaho as it does in Texas. Conner continued to thrive and grow, and love the outdoors, he just loved it with a squint.
When he was 2, we took him for his well child visit with a very influential pediatrician in the Boise area. I trusted this pediatrician implicitly. After all, he was my pediatrician, and I turned out okay. Plus, he is the head of a major medical group in town. That means he’s good and thorough, and would surely catch something if it was wrong, right? No matter how rare? Guess again. The pediatrician pronounced Conner in perfect health. We continued on in idealistic ignorance.
Anyhow, I’ll continue this blog in another post in a few days, and I promise I”ll explain what finally led to Conner’s diagnosis then. In the meantime, what I’d like for people to take away from this blog is this: Your pediatrician is NOT an eye doctor. He/she is checking height and weight and milestones, and giving a cursory glance at your child’s eye, but chances are, your pediatrician is not going to catch a serious eye malady in a toddler.
Having one eye larger than the other is NOT normal. If your child appears to have an eye larger than the other, or both eyes appear to be growing larger and bulging, even if slightly, take your child to an optometrist or ophthalmologist A.S.A.P. Even if your pediatrician has told you that your child’s eye/eyes are normal.
If your child has photophobia (extreme aversion to sunlight), or excessive tearing in one or both eyes, take your child to an optometrist, just to be on the safe side. These are classic signs of congenital glaucoma, and the sooner it’s caught, and treated, the better chance your child will have at normal vision.
You are your child’s advocate, and your instincts are worth something. Trust them.
If you know someone whose child’s eyes look like Conner’s please have them read this blog.
Finally, if you have a child with congenital glaucoma, I’d like for you to know that you are not alone. I’ve met a couple of other ladies whose kids are going through the same thing. If you’d like to meet other parents dealing with congenital glaucoma, please email me at firstname.lastname@example.org. I’d love to talk with you.
Until next time,