Glaucoma Awareness Month

January is Glaucoma Awareness Month.

So all you out there, be aware of glaucoma. Glaucoma is the leading cause of preventable blindness. If it's been a year or longer since you've seen (ha ha) an eye doctor, schedule your appointment today. Click here for more information.

And since I've been meaning to write down some of our adventures with primary congenital glaucoma, I can't think of a better opportunity. Here's the first installment.

DIAGNOSIS

(Gabriel, December 2001)

I've said it before and I'll say it again (probably until the day I die and then some): Gabe was an awful baby. I used to shock old ladies. They'd coo at my darling infant with the huge eyes and even huger cheeks and undoubtedly ask, "Is he a good baby?"

Of course they didn't want to hear the truth. Their own memories of infant-rearing were colored with the selective rose tint of time. But I'd tell them anyway. "No. He's awful. I'm not even sure I want this job anymore."

Somewhere between the sleep deprivation, the screaming, and the refluxing colic, I noticed a slight cloudiness in Gabe's right eye. So slight was it, that I only noticed it in certain lights. Specifically, the glowing afternoon sunlight pouring in from the west-facing window of the charming 1940s bungalow we were renting in Sunnyvale, California. It was so slight my husband has only recently admitted that he never saw it.

I asked my sister Kristin, whose qualifications as an expert resulted from having her firstborn ten months before me and a husband in medical school. "Hmm," she said, "I don't know." I asked my friend Lisa if she could see it. "Yes," she said, "But his pupils are the same size." Both answers were reassuring to me.

I'd also noticed that his right eye appeared larger than the other. But no one is completely symmetrical I reasoned, except maybe Heidi Klum. Besides, Gabe was my long-awaited baby, so he was perfect just the way he was.

But there's that cloudiness again.

I remembered an Oprah episode I'd seen years before. The actress Hunter Tylo (I realize it's weird I remember her name, but my mind is filled with such trivia) was discussing her lawsuit against Aaron Spelling. See, he'd fired her from Melrose Place because she was pregnant and he didn't think she could play the sexpot while pregnant. Turns out, she could because she didn't even show when she was 8 months pregnant, so she won her discrimination case (along with the envy of pregnant women the world over). As it turned out, her daughter developed a retinoblastoma (cancer in the eye!) and had to have her entire eye removed to save her life. I distinctly remember Hunter facing the camera and pleading with those watching to please see a specialist if you notice anything, anything at all, different with your baby's eyes.

I also remembered a woman in my parents' ward whose son was born with a cataract.

So I became convinced, mildly, that Gabe had cancer or cataracts.

At his two month check up I remembered to ask about it at the end of his appointment. Dan was with me and he added, "We've also noticed the right eye seems bigger than the other." I shot him a look that was intended to relay the thought: Don't make fun of Gabe's eyes! Heck, your eyes aren't the same size either.

"Hmm," replied his pediatrician. "I've noticed that too. I'm going to refer you to a pediatric ophthalmologist." She didn't sound particularly concerned; surely it couldn't be terribly bad. But she also didn't say it was completely normal because infant's eye color can change so much in the first year--which was the answer I really wanted to hear. Isn't that what we all want to hear when we ask a doctor's opinion, "Don't worry, that's completely normal?"

I scheduled his appointment that afternoon, but because the office had not yet received the referral, they scheduled him at the first available appointment in three months. The receptionist reminded me to call to make sure they'd received the referral before we came in for the appointment.

About a week later, I called to check the status of the referral. Still no referral, but the new receptionist noted my baby was only two months old, so she worked him in the next week. I called the pediatrician to have her fax over the referral. Late that afternoon, the ophthalmologist's office called back: "Is there any way you can bring your baby in tomorrow?" I said I could, but also asked if this was something I should be concerned about. "Just bring him in tomorrow."

Of course I was now very concerned. I made Dan and Chris (my friend Lisa's husband) give him a blessing that night. Gabe was blessed specifically that "his sight would not be impaired."

Thursday, January 17, 2002. There are countless days in a lifetime, and so few you recall with complete clarity. I managed the hours-long preparations for leaving the house with a newborn, which included feeding him right before I left. In the waiting room, he spit up. Actually, Gabe's version of spitting up was more projectile vomiting. Another patient was startled, "Oh, the baby just threw up." "He does this all the time," I assured her while filling out pages of paperwork, which took me considerable less time to complete than the 45 minutes I waited to be called in.

The assistant finally took us back. Blissfully, Gabe had fallen asleep in the carrier and wasn't screaming. The brilliant assistant started prying his eyes open and shining the penlight in them. I helped wake him up and tried to help her complete her examination, which upon retrospect was a complete waste of time and effort. She completed the history and left me alone in the room for twenty minutes with a tired and hungry and now completely awake baby.

The doctor came in and did her exam. I'm not sure exactly what she did, but she looked in his eyes with a light and waved some lighted toys for him to follow. Then she said, "Now I need him asleep for this next test I need to do. And it's a really important test, but he has to be asleep."

Seriously? If it was so important, why did the goofy assistant go and wake him up? Did she really think I could wave that magic wand any time I wanted? So she left and I spent thirty minutes trying to rock him to sleep. Finally, he dozed off and I called the doctor back. She came in about twenty minutes later, and of course he was awake again and now very hungry. She told me I should pump and give him a bottle (which of course I didn't bring). After some more frustration trying to soothe the un-sootheable, I did something I had never done before. I walked out of the doctor's office, told the receptionist I was going home to pump, and told her to let the doctor know I'd be back as soon as I was done.

Which of course meant I cried the entire drive home, the entire time I pumped and called my mom to tell her all about it, and the entire drive back. Exasperated, I walked back into the office, bottled breastmilk in hand. It was a bit of a wait, but they worked me back in. While I fed Gabe the bottle (he was starving, so he didn't care where it came from), she put drops in his eyes and touched them with what I now know is a tonopen. She finished up, and told me to just hold my baby for a little while.

As she closed the door, I fed Gabe some more and rocked him. I knew she didn't have good news and she wanted me to just have my baby--as just my baby--for a little while. It was quiet, but not the peaceful kind. The saying "the calm before the storm" isn't just an expression. It's a feeling.

The doctor came back in. She strapped Gabe to a papoose board. He was screaming bloody murder. She apologized to me, noting that it must be hard for me to hear him cry. "Ahh, no," I said, "He screams like this all the time." She must have put the dilation and numbing eye drops in before she started, but I hadn't noticed. Because he was screaming, she used little metal clamps to hold his eyelids open. Very freaky. When she finished looking at his eyes with a circular magnifying glass, she announced: "I'm ninety percent sure your baby has congenital glaucoma. I've spoken with a glaucoma specialist at Stanford who can see you this afternoon. Your baby will likely have surgery within the week."

The things I knew about glaucoma at this point were these:

1. Failure to screen for glaucoma was per se negligence in the state of California (thank you medical malpractice class);

2. Glaucoma was most likely to affect older African-Americans (yes, I read the medical brochures, doesn't everyone?).

3. Oh yeah, and glaucoma caused irreparable BLINDNESS.

I think I stuttered, "Glaucoma? Like what old people get?"

Much like Alice down the rabbit hole, I felt the room stretch and the doctor now seemed to be speaking from the end of a long hallway. The doctor rattled off the directions and information about the appointment time, the specialist's qualifications and so forth.

"Can I call my husband first?" I wondered.

"Oh! Of course," she said and set me up in her office to call him. This was before cell phones were everywhere.

While I waited in the lobby for Dan to meet me so we could drive up to Stanford together, I overheard the receptionist apologizing to the other patients. Apparently the doctor was running behind because there was a baby with an emergency.

And then I realized that the "baby with an emergency" was MY BABY.


[To be continued in future installments. Unless of course you are so bored you can't bear it. In which case you should skip my "journaling" and just schedule an eye exam.]