Emily Joan: Making Her Mark

The day I brought my third child, Emily Joan, home from the hospital I was worried about a lot of things. I was worried I wouldn't remember how to care for a newborn. I was worried my older children would have a difficult time adjusting. I was worried I would never sleep again.At first, I wasn't worried about the faint, red mark on the right side of Emily’s face. But that night, as I stared at Emily under the dim light of the lamp by my bed, the mark finally caught my attention.

I ran my fingers over where the mark started in the corner of her right eye and followed the mark’s diagonal outline down her soft, pink cheek.  Something’s not right, I remember thinking, and the seed of worry was planted in my overtired and overprotective mind.

The next morning, when I took Emily to the pediatrician for her newborn check-up, the pediatrician asked me if I had any concerns. “Just the mark on her face,” I blurted out, wondering why he hadn't brought it up already.  But to anyone else, it was barely noticeable beneath the bright pink tone of Emily’s newborn skin.

The pediatrician took a second look and said that it was some type of birthmark. “Either a port wine stain, which never goes away, or a hemangioma, which gets darker and thicker but goes away in time,” he said.

“How do you know what kind it is?” I managed to ask, choking back the tears.“You just have to wait and see,” he said.

My pediatrician’s words haunted me as I drove home from the appointment. I am not the type to wait and see. I am the type to seek and find – to Google and Bing - to exhaust every available resource until I know every possible outcome.

As soon as I got home, I ran to the computer. After an hour of searching on the internet, I was wishing I had taken my pediatrician’s advice.

Not only had I seen numerous unpleasant images of birthmarks on babies, but I had learned about several syndromes associated with large facial birthmarks. These syndromes caused serious heart and brain problems too.

Suddenly, worrying about a mark on her face seemed meaningless compared to worrying about a life-threatening or life-altering syndrome. I read page after page of web content. But as hard as I tried to compare Emily’s birthmark to the images on the computer screen, there wasn't a website in the world that could diagnose Emily. All I got from the world wide web was world wide worry.

One positive thing I learned from the internet was that Emily needed to see a pediatric 

dermatologist. I called the nurses line at Lucile Packard Children’s Hospital, and a nurse referred me to Dr. Benjamin, who not only specializes in infantile birthmarks but is an expert in the field.

Dr. Benjamin couldn’t fit Emily into her schedule for a few weeks.  I was willing to wait to see the best.  But with every passing day Emily’s birthmark got darker. And my worries got stronger.

The next few weeks felt like years.  Thoughts about what might be wrong with Emily consumed me. My three year-old son, Owen, started to recognize the look on my face when I was contemplating the worst. “Don’t be sad mommy,” he would say.  I would run to my bedroom, shove my head in a pillow and sob until Dora the Explorer was over.

Finally, three weeks after Emily was born, my husband, Norm, and I sat in a tiny, white room and watched anxiously while Dr. Benjamin examined Emily’s large, red birthmark. It felt like good news when Dr. Benjamin said it was a hemangioma. I knew that meant it would go away.

Because the birthmark was so close to Emily’s eye, Dr. Benjamin was concerned that it might grow over the eye and cause blindness.  My worry-free minute was over.

Dr. Benjamin wanted Emily to start taking a beta blocker called Propanolol.  While the drug has been around for years, it had just recently been discovered as an effective and safe way to treat hemangiomas.  Hopefully, the drug would keep Emily’s birthmark flat so her right eye would remain open.

Before leaving I forced myself to ask Dr. Benjamin about the syndromes, even though I wasn't sure I would like her answer. She said both the size and placement of Emily’s birthmark put her at risk for a syndrome called PHACES. But, she said, Emily seemed like a healthy baby. There wasn't a need for further testing right now.

“We will just have to wait and see,” the dermatologist said as she smiled and walked out of the room. At that moment, I thought those were the worst words any parents could hear.  But then I gained some perspective.

Over the last six months, Emily and I have spent a lot of time in waiting rooms with other families. I met parents who were waiting for appointments, waiting for results, or waiting for their children to be admitted to the hospital.It made me realize how lucky I am. I get to bring my baby home. I get to watch her grow and learn and laugh. Each day is a wonderful gift – just not a guarantee. 

Emily, now 6 months, is growing and thriving. The drug kept her birthmark from interfering with her vision and lightened the mark’s appearance. She already had an echo-cardiogram which showed her heart looked normal.  Since she is meeting all her milestones, it appears, so far, that her brain is functioning perfectly. 

As for when the birthmark will go away and whether or not Emily has the syndrome, we will just have to wait and see.  Waiting and seeing really isn't such a bad thing after all. Because it means that at this very moment, as far as I know, we are all okay.