Hemangiomas: Suzanne's Story

The first one appeared when Anna was just a few days old. I thought it was a diaper rash at first. As a first-time mom, I didn't know one red spot from another.

After another day or two, several more flat red spots appeared in and around Anna's diaper area. I had never heard the word before the doctor told me they were hemangiomas, and the word flew right over my head. I caught the "oma" ending — which sounded to me like cancer, like melanoma — which immediately had me worried.

Now, nearly 3 years later, I know that I didn't need to be alarmed. Hemangiomas are improper formations of blood vessels, and wouldn't pose any threat to Anna's health. The neonatologist told us then that we could expect them to grow larger and redder, but they would most likely disappear by the time Anna went to kindergarten.

After discussing Anna's hemangiomas with friends and family, we found out that we were hardly alone — many others had had them as kids or knew someone who did. Apparently they are pretty common, occurring in approximately 1 out of every 100 births, and there's a higher risk among babies like Anna, who are Caucasian, female, and born prematurely.

In the Hospital

Anna's birth was a big surprise for us. She arrived 7 weeks before her due date. Her health was good from the start, but she spent 2 weeks maturing in the hospital NICU before going home.

There was some concern that Anna's diapers would rub against the hemangiomas, breaking the skin and leading to bleeding or infection. But because none were near any vital organs, there was a pretty low risk for any more serious complications. So the doctors weren't recommending plastic surgery or any other treatment. We were relieved that no drastic measures were needed — the thought of any sort of surgery on my newborn was truly frightening.

By the time Anna was released from the NICU, she had nine confirmed hemangiomas. The tiniest one was the size of a pinprick on her back; the largest one just about encompassed the top of her entire right big toe. They looked like huge blood blisters, and it was hard to imagine that they weren't causing Anna any pain. But she never winced when they were touched and or showed any signs of distress. The doctors assured us that they would not be painful as long as the skin stayed intact.

We had been referred to a pediatric dermatologist to follow Anna for any potential complications. He explained that hemangiomas usually grow rapidly for about 12 months, grow with the child for another year, and then recede over the next 5 to 10 years. In addition, my mother-in-law went to the library and did some research that helped us get a better understanding of what to expect.

The dermatologist ordered an ultrasound of Anna's head and abdomen to make sure there were no internal hemangiomas. While I found this test painless and fun when I was pregnant, for 4-month-old Anna it was pure torture. It seemed there was nothing I could do to comfort her during the 20-minute procedure. She was scared of the dark room, the slimy gel, and the strangers touching her. However, the test produced good news: no internal hemangiomas.