Some Journey

Hemangioma

It’s almost funny to think about how little we now think about the tumor we lived with for almost seven years. Since we’ve changed churches, and Ethan had his surgery before he started school (we homeschooled until he was in 2nd grade), very few of the people whom we are with on a regular basis even remember or knew Ethan when he had his hemagioma, a benign vascular tumor. But I was recently emailed by someone whose son is having the same surgery Ethan had, and thought that it might be helpful to both she and others who are trying to better understand the process and development. We even have a family at church in which two of the three children have hemangiomas. Their hemagiomas, however, are both entirely capillary. Ethan’s was a combination of capillary and cavernous.
At birth, it was hardly noticeable. He had a very small white mark on his cheek, and we thought he had scratched himself with his fingernail. Over the next few weeks, the white mark became red and began to grow in a line up his cheek, as you can under his sunglasses in this photo. We asked about it at his one month check up, and were told that it was a hemagioma and would probably get worse before it got better. At that time, I had no concept of what “probably get worse” would be like.
When Ethan was 6 weeks old, I was giving him a bath. As I wiped the washcloth over his cheek, it began to turn purple and swell. In less than a minute, it had grown to what you see here. We returned to the doctor, where they explained that to perform surgery on a small baby would pose great risk due to the inevitable blood loss, and that the tumor itself posed very little danger because of where it was located. The best course of action was to let the tumor run it’s course, and keep tabs on it in the mean time. We were told that most hemagiomas would continue to grow until the baby is about 9 months to a year old, and then would begin to involute on it’s on, and that 95% would go away entirely by the time the child is 12 years old. Ethan’s did continue to grow, and maxed out when he was about 10 months old . By the time he turned two, the capillary part had begun to fade. Here he is at about 2½ years old. Over the years, the tumor began to shrink. Here he is at ages three and five.
When we decided to stop homeschooling and send Ethan to CCS for second grade, he decided he was ready for surgery. The doctors had said that the longer he waited the better, but after 4 or 5 years of age he was big enough that the blood loss would not be such a risk. We had left the decision up to him, because for a long time the idea of surgery was so much more traumatic to him than living with the tumor, it didn’t seem worth it to push him into something he didn’t need to do. The spring before he turned seven, he was ready.
His surgery was performed by Dr. Larry Sargeant here in Chattanooga, though he also saw Dr. Vasconez at UAB in Birmingham for a while, and we liked him as well. Somewhere I have some pics of Ethan immediately post op, one week and two weeks, but I can’t put my fingers on them right now. If I find them, I’ll post them. In the meantime, Here is onefrom his 9th birthday, which he spent in New York.