Six Years Frozen - Time to Thaw

Six years ago, I lay in a hospital bed in Scottsdale, Arizona, with my world turned upside-down.

After a normal second pregnancy and an incredibly easy VBAC delivery - albeit four weeks early - my son was born.

In the immediate moments following his birth, everyone dismissed the red blotchiness on much of his face and body as normal.

He was a normal, healthy baby boy.

But then, when the red blotchiness didn't fade, he became something else, apparent to me not by my own observations but by the sympathetic glances I started to receive from the well-intentioned nurses and hospital staff.

"Congratulations!" they said with mock enthusiasm, while never looking me in the eye. I knew they knew something wasn't right, but I wasn't about to believe it. This was my baby, and if something was wrong - really wrong - I believed I would have known it.

At the first opportunity, I called my sister in New York and described exactly what I saw. "He has pink blotches on the entire left side of his face and the bottom half of his right cheek, and it's almost like someone drew a line down the center of his body, front and back. The right side is completely normal, but the left side looks kind of mottled."

"Does one side look bigger than the other?" she asked matter-of-factly in a calm, confident tone. Never before did I appreciate my younger sister, the pediatrician whiz-kid, like I did at that very moment.

"Not that I can tell," I responded, all the while scanning my son from head to toe. I remember holding up his tiny feet, side by side, and and asking my husband, with tears streaming down my face, "Do you think one foot looks bigger?"

Of course he said no. Even if he did notice a tiny discrepancy, I'm sure, out of love and in a desperate attempt to make everything alright, he would have said no.

"Ask for a derm consult, and meanwhile, I'll do some research on my end," my sister said, adding, "and try not to worry. I'll be there soon."

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Shortly after I became pregnant with my son, my husband and I had decided it was time to move back East. Though we loved our brand new married life in Arizona, in our brand new home with the pool and the mountain views, we missed our family terribly. We both loved our jobs, but we wanted our children - our daughter would be two-years old when the new baby arrived - to know and bond with our extended family in more significant ways than one or two-week visits allowed.

So we made the bold decision to pick up and move in May of 2001, the end of the school year for my husband, a teacher, and time enough for us to wrap up all our loose ends in a tidy little package - stuff like selling our house, resigning from our jobs, choosing a new place to live, and finding new jobs, to name a few.

We had no reason not to believe we could pull this off without a hitch.

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The pediatric dermatologist that assessed my two-day old son in the hospital was kind and direct: "The skin discoloration appears to be what's known as a port wine stain, a kind of birthmark that ranges anywhere from light pink to dark purple. The location of the birthmark over the eye and forehead is our greatest concern, as this may be associated with other vascular abnormalities."

"So what do we do?" I asked, robot-like.

"You'll need to get an MRI of his brain as soon as possible to see if there's any visible vascular malformation, and you'll need to watch him closely for any signs of seizure activity."

*******

I never set foot in a boxing ring or ever dodged knock-out punches from anyone, but the first few weeks of my son's life outside the womb certainly felt like an epic battle for survival.

In one corner sat steely-eyed doctors and nurses armed with facts and statistics and ifs and thens (not to mention all the horrors I read about online), and in the other corner sat me, my husband, our daughter, and our infant son - the one we couldn't even imagine was anything less than perfect.

So we put on our game faces, and we fought.

At ten days old, my sedated and sleeping son entered the MRI chamber for what seemed like the longest diagnostic test ever, while my husband and I sat quivering, shivering, inside the loud, clanking MRI room.

Many long days later, we got the results: he was OK. The doctors made sure to qualify their statements by explaining that although they could see no vascular lesions on his brain at this time, it did not mean that he would not develop one or more as he aged.

For the moment, we were incredibly relieved. I remember looking at my son and feeling in my heart that he was fine, for wanting with every fiber of my being for him to be fine, but just not knowing for sure.

I realized then that we never know anything for sure.

This sounds like a simple realization - an epiphany one should have much sooner in life - but every time I looked at my daughter from that point forward, I realized how much I had taken for granted.

She was perfect, and that, in and of itself, was a miracle.

*******

At two-weeks old, I took my son to his first visit with a pediatric ophthalmologist, since the location of his port wine stain near his left eye placed him at greater risk for glaucoma.

We sat in a very busy waiting room for a long time, and then sat even longer in different examination rooms while my son's eyes were poked and prodded and filled with all kinds of drops.

In the end, I heard more good news: no glaucoma; everything looked fine.

We went home, and about two days later, both my son and I contracted what I termed Pink-Eye from Hell. The doctors we saw had another name for it: Epidemic Kerato Conjunctivitis, or EKC.

It lasted six miserable weeks. For all intents and purposes, we were both blind, suffering from what felt like glass shards in the eyes and an acute sensitivity to light. (Remember: we lived in sunny Arizona at the time.) I wore sunglasses indoors and could barely open my swollen, painful eyes. Neither could my baby son.

It was a terrible time, not only for what we had already endured, but for this unnecessary complication.

In the midst of our eye trauma, when my son was about four-weeks old my sister arrived in Arizona and traveled with us to Tucson for my son's visit with a highly-regarded specialist in pediatric dermatology. We were armed with knowledge - much of it very frightening research about birthmarks and seizures and developmental problems and lethal strokes - but we had no other choice. If ignorance is bliss, then we were scholars of all things terrible and traumatic.

The doctor spoke clearly and calmly about my son, explaining that some of his birthmarks were indeed port wine stains, and the other mottled areas were something called cutis marmorata bla bla bla congenita. In other words, my son had vascular abnormalities from birth. The port wine stains could be lightened with pulse dye laser treatments, and the mottled veiny-looking areas would come and go depending on my son's temperature. If he was hot or cold, his left arm, leg, and torso would appear mottled in a darker reddish tone, but at room temperature, the vascular abnormality would be virtually unnoticeable.

I remember leaving Tucson feeling relieved, but I also remember the nagging sense of "what if?"

I had read that in children like my son, debilitating seizures were most likely to occur during the first year of life, as was the possibility of glaucoma and other internal problems. The risk of seizures declined after the first year, but not completely.

There would always be a risk of seizure or stroke - a prospect that I could not comprehend. Did not want to comprehend.

*********

I don't know about you, but when circumstances become overwhelming, I like to exert some physical energy. So when my sister commented that she wanted to try rollerblading while visiting me in Arizona, I couldn't help but try it myself.

Even though I was a few short weeks post-partum.

And I had been through some pretty heavy emotional trauma.

And I was blind with Pink Eye from Hell.

Not to mention our house was on the market and people were coming and going like it was a coffee shop...

Oh, I ignored everything, and especially my sister's and my husband's warnings. And I slipped on those rollerblades and started to cruise.

Lemme tell ya, I seriously enjoyed those brief moments of rollerblading nirvana - the feeling of wind on my face, the freedom, the out-of-control speeds...

Of course, I ended up in the emergency room with a severely broken pinky, and although I had managed to hide my contorted finger from my husband when I returned home from my rollerblading jaunt, there was no way I could hide the enormous cast that extended from my fingertips up over my elbow when I got home from the hospital.

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TO BE CONTINUED