Lessons Learned

By Pascale Wowak
Web Exclusive - September 10, 2007

When my baby daughter was two weeks old, I noticed a red dot on her torso and another one on her forehead. My husband proclaimed them to be moles. I wasn't so sure, and quickly sought the opinion of our daughter's pediatrician.

"Hmmmm," the doctor said as she said as she looked at them—over and over again for what felt like the longest time. It was the kind of "hmmmm" that seemed to be saying: "I'm stalling because I know what this is but I don't want to scare you so I'm going to triple check and take my time figuring out how to break this to you."

When she finally turned to me and said, "These appear to be hemangiomas," I gave her a blank stare. She explained what they were and told me not to worry about them. She'd evaluate them again in two weeks.

I, like any other neurotic and anxiety prone mother, promptly went home and scoured the web. I saw pictures of baby's faces completely covered, swallowed, and ultimately disfigured by huge red masses of exposed blood vessels. I found these images disturbing and frightening. I looked at my daughter and cried—cried so hard I could barely breathe. Then I decided to calm down and really examine why I was so distraught. Hemangiomas are bundles of blood vessels gone haywire: instead of being under the skin they take over the upper layer of skin, and grow and proliferate at astounding rates. They are considered to be a type of birthmark even though they aren't apparent at birth but rather mysteriously appear at about two weeks of age. To this day, their cause is completely unknown.

For the next several weeks, I stared at her tiny red dots all day, every day. Obviously, her older (two-year-old) brother kept me very busy and distracted, but the hemangiomas were all I could think about when my brain wasn't tied up with his needs. We scheduled an appointment with the premier, internationally-renowned specialist handling these cases—who happened to be a mere one hour drive away from our home and, miraculously, covered under our insurance plan.

As expected, the earliest she could see us was three months from the time of my call. In the meantime, I watched in horror as they grew and grew and grew. My fears of it taking over her entire face were cemented when it would literally double in size overnight. I started to measure them every day and was appalled to see them change so drastically in a mere 12 hours time. By the time she was three months old the one on my daughter's forehead was about the size of a quarter—relatively large on the scale of her teeny-tiny little head. It was raised, and a vibrant reddish-purple color. Against my daughter's very fair skin and blonde hair, it stood out in sharp, striking contrast.

I started thinking about my past reactions to parents with children who have disabilities. I had always felt a huge degree of sadness and empathy for parents whose children were handicapped or disfigured. I couldn't imagine their disappointment. In my attempt to be polite and not make it appear as though I was ever "staring" at their children I'd always shift my gaze away from them so as to not offend or make the children feel any more self conscious than how they must already have felt. I honestly (and ignorantly) believed that deliberately not looking at them was helpful and polite.

Now I was a parent walking around with a teeny tiny baby with a massive red disfiguring growth, smack dab in the middle of her forehead. Always the astute observer (having spent a decade as a police officer) I couldn't help but notice all the quickly averted glances around me. The awkward and furtive shuffling away from us, and people giving us wide berth. People looking down, up, left, right—basically anywhere but towards me and my baby daughter.

I was hurt and offended. Could they not appreciate how adorable she was: her perfect little nose, cute ears, pursed lips? Was the hemangioma really all they could see? I was angry, I felt alienated, and I was at a complete loss as to how to handle it. The emotions were all so raw and close to the surface for me. I was still struggling with dealing with my own set of issues (including my own vanity) in relation to her possible future looks. I was coming to grips with the reality that she would not look "normal." While part of me wanted to go up to people and ask them why they looked away, I had my own discomfort and responses to think about.

So I managed to handle the averted glances as best I could. But then the comments started coming, and rocking the fragile foundation that I had built over the past few weeks. The little old ladies were the most cruel and heartless of the bunch. "Such as shame," they would say, "she could have been so pretty." When I was out with my toddler son and baby girl they'd look at my boy and say to me "Well, at least you have one child who you can take nice pictures of." That these comments were made in front of my children infuriated me. It was mind numbing. What could possess people to say these things? Out loud! Why didn't anyone just ask me what "it "was? Didn't anyone care about the little girl behind the hemangioma? Didn't anyone want to know how she was eating or sleeping, just as every stranger had felt compelled to ask me when I walked around with my son at that same age? Did her hemangioma suddenly take all of that away? Did it have that much power as to affect people's ability to simply see a newborn baby?