Emily and her Hemangioma

Hemangioma? What the heck is that? Well, first of all, let me tell you how found out.

When Emily was born, we noticed a small, quarter-sized pink spot on her right shoulder. It was completely flat. Over the next month, this mark grew VERY quickly, both in size and thickness. Many blood vessels were visible through the skin and the bump had a white/blue outline.

We went to our local pediatrician, Dr. Gould, who looked at the birthmark and immediately knew what it was. He told us that it was a hemangioma. A hemangioma is a birthmark known as a vascular anomaly. This means that it is connected to the circulatory system and is filled with blood/blood vessels. Hemangiomas grow quickly for the first 6 to 12 months of life. They then start to involute, or shrink back down. Unfortunately, they shrink much slower than they grow. Hemangiomas themselves don't hurt. Anyway, Dr. Gould said that we would keep an eye on it but that it shouldn't really cause any problems for Emily.

About a month ago, two small scabs appeared on the hemangioma. Being the researcher that I am, I discovered that the hemangioma had developed ulcerations. Basically, the hemangioma grew faster than the skin could stretch and the skin broke down. Over the last few weeks, the scabs have grown and are now huge open wounds. We started putting Bactroban on the ulcerations and covering them with a non-stick dressing. When Dr. Gould saw the scabs, he wanted to go see a specialist at Primary Children's.

We had an appointment last week with Dr. Grimmer, the surgeon with the Vascular Anomalies Team at Primary Children's. He told us that a hemangioma is pretty slow to involute (shrink down). Only 50% of the the time is it involuted by age 5, 70% of the time by age 7, and is always involuted by the age of 10-12.

He basically said that there are three options for Emily's hemangioma. The first is to wait and see. It was involute eventually. However, it will leave a scar. There will be extra skin and fatty tissue left due to the rapid growth. The second option is oral steroids. Oral steroids have been found to stop the growth or shrink the hemangioma in 60% of cases. Unfortunately, oral steroids have a lot of risks and side effects. Swelling, cessation of growth, irritability.... These are just three of the possible effects.

The last option is surgery or removal of the hemangioma. This may be Emily's best option. Because of where her hemangioma is, she has a lot of tissue to use to close the skin after the removal and Dr. Grimmer thought that she would have pretty good results. We would have to wait for surgery until the hemangioma is done growing, or in a few months.

We have an appointment with the head of the Vascular Anomalies Team at Primary Children's, Dr. Vanderhooft, on Sept. 22nd. In the meantime, Dr. Grimmer is going to take the photos that he took to their monthly "Vascular Anomalies Team Conference" in 1 1/2 weeks and get some input on her hemangioma and possible options.

Our biggest challenge at this point are the ulcerations. They are VERY painful for Emily. We can't immerse her in the tub anymore - she screams and cries when the sores touch the water. We have to be really careful not to touch her on her shoulder when we pick her up. Dr. Grimmer has us putting Silvidine ointment on the ulcers twice daily. Poor little girl - she cries so hard when we are putting the ointment on and doing dressing changings. Plus, the tape that we are using is really irritating her skin.

We hope that Dr. Vanderhooft will have some good ideas for us. I have read that they can use laser treatment to heal the ulcerations quicker. I am really worried about infection and ulcerations will leave scars. Never mind the fact that I hate to see Emily in so much pain.

We'll keep you updated on the progress of her treatment and what we find out over the next few weeks.