These cold, dismal drives of acceptance

This feeling of driving home from the doctor's after getting bad news is becoming frighteningly familiar. This quiet, this nothing to say. The cold feeling of emptiness that sort of spreads out from the inside.

I do remember life as a mother before I had felt that way. When I took the girls to the doctor, worried about something horrible and left feeling reassured. Told that it was nothing, that everything was fine. It's hard to capture, but I can remember that feeling. Joy, relief, warmth. The opposite of these cold dismal drives of acceptance.

The smart guy was so nice, so good with max. He made sure to talk directly to him and compliment our family. But he also said that the right eye's fundamentally abnormal. Apparently, Max did not form a macula in his right eye. That's the specialized spot in your eye that allows you to see clearly. The cataract is simply a bulge in the posterior lens, nothing to remove since theres no macula to see with. He thinks his vision is 20/200 in the right eye. His left eye is still perfect.He told us to patch an hour a day at most & protect the heck out of the left eye.

I have a headache.

A total eclipse of the retina...

The pediatric eye doctor never called me back.  

A week after we saw him, I took Max to see the local optometrist who is very patient and good with kids. Max had been wearing his patch for a few hours. He could reliably see some of the items on the 20/125 and 20/200 level. But the optometrist thought the cataract looked more prominent and his impression was that taking it out might improve Max's ability to see out of that eye. He thought surgery might help.

20/200 is legally blind. Oh dear Lord, I am hoping for legally blind.... 

So I took Max to get a toy for being so good before going to visit daddy at his office to tell him. While we were waiting in his office I just peeked in Max's eye, the first time since I had found it back in April. The room was dark, his patch was on and I shone the opthalmoscope into his weak eye. 

The cataract fills his pupil! I am looking at an eclipse of the retina! All I could see was a tiny rim of red around this huge black blob, right in the center of his field of vision. I immediately ripped off the patch, much to Max's delight, feeling a horrible weight in my stomach. He can't possibly see around that! Patching is cruel!

I showered Max with kisses, updated my husband between patients and called the pediatric othamologist back. He was unavailable. But his secretary took my message and told me he would call me the next day. When he called, I told him that both the local optometrist and I thought the cataract was bigger and seemed to be seriously obstructing his vision. 

He said he hadn't though it changed at all but offered to see Max again that same day. I agreed to go because I needed him to answer my questions:

1. Is patching worth the tears or is it just torture?

2. Should his cataract come out? 

We arrived half an hour early, just in case, but still sat in the crowded waiting room for over an hour. The same grumpy nurse checked his vision and proudly declared she thought he was now at 20/800 in that eye, scowling at my comments about his vision the day before. I took a deep breath before I responded.

"Historically, we have not been able to capture his visual potential in this office," I replied coldly but professionally.

So then the doctor came in. He looked, he checked, he dilated and then decided Max couldn't see well enough out of that eye to justify worrying about the cataract. He thought it was indeed the same, a millimeter too small to remove. Surgery is only warranted for cataracts bigger than 3mm. And he thought there was no point to patching if his vision had not improved subtantially in that eye. 

"The light reflex is abnormal in that eye," he said dourly. "If the visual potential of the eye is abnormal,  I would not recommend removing the cataract. Not with an abnormal posterior eye."

But I couldn't help thinking: Those guidelines are for a normal eye, not one that is already struggling. Since we know his eye has some potential, shouldn't we at least consider taking the large black spot that is directly in the middle of his field of vision OUT?

So I asked exactly that.

"Surgery is only indicated for cataracts over 3mm," he repeated. I was starting to get frustrated. If all the mommies and daddies with children who had congenital problems had passively agreed that just because their child wasn't "normal" they didn't need medical or surgical treatments, where would we be today?

"I know," I said. "But this is Max. My Max's eye. Does Max need this spot to be taken out to allow patching to have the best chance at improving his vision in that eye?"

"No," he said.

"But aren't you giving up on that eye completely by doing that? He is three. I am a believer in the ability of children's nerves to adapt and make new connections. Are you sure there is no hope for this eye to get stronger?" I asked.

"No," he said. "I am not certain." 

"If we give up on the eye it will drift out and he won't have conjugate gaze and won't have the same professional potential...." I started rambling.

"That can be fixed surgically," he replied.

"But what about surgery now? To remove the cataract?" I persisted.

"There are risks with surgery," he said.

Yes, I know! He has had a few already, I thought but I didn't say it. I was alone this time. No husband to give me the "shhhhh" glare. 

All I could think was that the risk of no surgery was almost as bad as the worst likely outcome of the cataract surgery - to lose vision in that eye.

He knew I was not satisfied with his answers. So he offered to send us to the smartest person he knows. Who happens to be a neuro-opthamologist in Boston.

This is called a "smart-man" consult. I have done this before as a doctor but have never been the parent going to the appointment. If you don't know how to answer a question or are not sure what the next best step is, as a primary care doctor you can send your patient to a "smart man" (or woman!). The person I used to send people to in Virginia was a rheumatologist. He knew everything.  

I called the Smart Man today to set up our appointment. His first question he asked was how urgent is this issue? I told him. My son is three, the questions are: Do we give up on the eye or keep patching? Do we remove the cataract or leave it? 

"At three, we need to do all we can. Patch for 2 hours a day. I will see him December 20th," he said. 

He didn't give me much, but he gave me hope. A delicious dose of thirst-quenching hope.