Monday, August 29, 2016


August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings

August 23, 2007- When you bring your baby home from the hospital for the first time, it's supposed to be a joyous occasion. The slow, careful drive from the hospital. Walking up the driveway, unlocking the door, and crossing the threshold into the home. Your home. This is it, son. This is where we live.

We were discharged from St. Peter's Hospital with the boy with cloudy eyes and were sent to the pediatric ophthalmologist's office where he was diagnosed with pediatric glaucoma. Glaucoma in children is a rare condition, affecting about 1 in 10,000 kids. The disease causes high eye pressure, and this pressure damages the optic nerve, leading to blindness if left untreated. The newborn presentation is the most severe. If your kid has glaucoma at birth, he will likely be blind, we were told. Tough luck.

The drive home from the eye doctor's office was a bit surreal. I'm driving, my wife shotgun, and my 2 year-old daughter and 2 day-old son with cloudy eyes riding snug in their seats in the back. We were just told that the boy would likely be blind, and our only hope was to head to Boston to see a glaucoma specialist to attempt to correct the problem.

No joyous homecoming, no fanfare. Just tears. I remember thinking that it wasn't supposed to be like this.

We enter the house, sit down, and take a moment to enjoy the presence of our son and daughter together in our home. My wife immediately got on the phone and called the doctor in Boston. The doctor himself answered the phone (weird, huh?), and an appointment was set up for noon the next day. Calls were made to family members telling them the news. I called a friend whose father was an ophthalmologist in town, and he got back to me. If the doctor here says to go to Boston, you go to Boston. You're in good hands.

We were going to Boston. Homecoming.

Thursday, August 25, 2016

Holding it together in the waiting room

The story so far:

August 22, 2007: Something about his eyes
August 23, 2007: Whispers and gut feelings

August 23, 2007. I was home with our daughter getting ready to come to St. Peter's Hospital to take my wife and son home for good. At the hospital, the pediatrician came in to discharge the boy. My wife made a request, but she was insistent enough for it to be an order, "Can you take a really good look at his eyes? A really, really good look?"

The pediatrician left the room with our son to have the benefit of the better lighting in the nursery. She came back and reported that indeed his eyes were cloudy. My wife called me at home with the news: the doctor thinks our son has either cataracts or glaucoma, and she was going to make a few calls and get back to us soon.

I got to the hospital, and we packed up our belongings and got ready to leave St. Pete's with our son and his big sister.

Then the phone rang in the hospital room. It was the pediatrician instructing us to head over to the pediatric ophthalmologist's office right away. Don't go home with your new baby, but go right to the eye doctor's office. They were waiting for us.

Things were getting serious.

We arrived at the pediatric ophthalmologist's office and filled out the obligatory paperwork. We waited, our tiny family of four, playing with the toys and nervously reading the books to our 2 year-old daughter and our 2 day-old son with blue, cloudy eyes. Something was up with the boy's eyes, and we knew it was not good. We were anxious as we were called into a room, and we gave our son's short history to the assistant. Normal pregnancy. Normal birth. Cloudy looking eyes. Here we are.

An examination was done by the assistant, and then the doctor made his entrance. Another round of history taking, and another examination. We were told that our son may have glaucoma. Drops were administered to the boy's eyes so his intraoccular pressure could be checked. We were given a book about childhood eye diseases and instructed to read the chapter about pediatric glaucoma while we waited in the waiting room. (Funny, the chapter had been written by the very doctor who was examinating our son.)

While in the waiting area we read about our son's possible condition. There was one sentence in particular that brought us to tears. Something about the newborn presentation of glaucoma being particularly severe, and children who present with glaucoma at birth will be blind. Blind.

Now, I'm no genius. But who the fuck in their right mind tells parents that their child will be blind by having them read a chapter in a book? In a waiting room? With other people around? You want to see a couple thirty-somethings cry? Tell them their 2 day-old son will be blind in the doctor's office waiting room. There must be a course in medical school that this guy missed. Something like, "How to tell parents shitty things about their child's medical condition" or "How not to be an asshole."

Anyway, we were brought back into the exam room, and our son had his eye pressure checked. Another doctor was brought in, and discussions were had. Consultations were made. Waiting and anxiety and attempts at holding ourselves together continued.

We had a diagnosis: pediatric glaucoma. Our son's condition was severe enough (and rare enough) to warrant a trip to Boston to see a specialist to manage this condition. We were referred to Dr. David Walton, and sent home with our children and a phone number to call to begin our journey.

(The doctor who had us sit in the waiting room made at least one right move that day. He sent us to Dr. Walton.)

Wednesday, August 24, 2016

Whispers and gut feelings

August 23, 2007. Our son was born the day before, and we were starting to realize that his eyes were different. They were cloudy. They just didn't look right.

I can't remember who brought it up first. It must have happened in one of those small, whispered conversations that occur between a married couple. "What do you think of his eyes? Have you noticed his eyes?"

"Yes, they look different."

Something was different about the boy's eyes. He was perfect in every way - 9 pounds, 10 ounces, big head, and light colored hair. But he kept his eyes closed, and when they finally did open, they were cloudy. They saw nothing.

We were in St. Peter's Hospital on the maternity floor. One of the nurses came in to check on us while we were hanging in the hospital room. We asked her to take a look at the boy's eyes and check if anything looked funny. She held my son, looked at his eyes, and reported that the grey, cloudy blobs were simply his eye color. Nothing to worry about.

Case closed, right? Nope.

You know when you have a gut feeling? Something that just tears at you and grabs you and won't let go? This was one of those feelings. My wife and I were not satisfied with the nurse's assessment of my son's eyes.

We couldn't let it go.

Sunday, August 21, 2016

Something about his eyes

August 22, 2007. It was my 9th wedding anniversary. But we didn't celebrate it. Our son had just been born the night before, and we were celebrating his new life.

I awoke early that day, unable to sleep from all the excitement the night before. (We strolled into St. Peter's Hospital a little after 10 pm, and the boy was born just before 11. He came out like vaginal cannon ball.)

That first night of his life was a blur. Doctors and nurses and holding him and looking at him. Touching his miniature feet and hands. Looking at his eyes.

Something about the eyes.

They remained closed much of the time that first night. There may have been a moment or two when the eyes blinked, but only a quick moment. There was something about the eyes. My wife knew it. I knew it. We just didn't know what it was about his eyes. Just...something.

So on my 9th anniversary, I got up and fed my 2 year-old daughter. I got her dressed, and brought her to meet her new little brother. The hospital scene was typical; bassinet beside the bed, and my son being held by his exhausted but beautiful mother. And the boy and his big sister met for the first time.

Still, there was something about the eyes.

Our room at St. Pete's looked over a courtyard. Not the best vista, but we weren't too interested in the view. While we were hanging out and laughing and holding and loving our children, I took a moment and brought my son over to the window, just to show him the sky, the bricks, the clouds, and the world.

Finally he opened his eyes, and I could see them very clearly. He kept them open, looking right up into the unbelievable blue sky. His eyes were cloudy. Grey. Mirrors of the clouds that gently hung in the blue August sky above. Slightly moving around, as if he was searching for something that wasn't there. His eyes were cloudy.

These eyes were blind.