I know that there are some parents who have come across our blog looking for information about hemangiomas, so I thought I would share about Caroline's treatment progress, since it's been awhile. If you have stumbled across our blog this way and are now checking in with us regularly, I'd love to know who you are! Leave us a comment! I always find it helpful to know other parents following a similar path with their child.
Caroline is still taking propranolol (a prescription blood pressure medication) to treat her hemangioma. She has been taking the drug off and on for about a year now. Since she has been taking it, we have seen slow but steady change in the appearance of her hemangioma, mainly in the color and size. It is lighter than before, and has more of a "broken" appearance on the surface rather than a bright solid red. It is also shrinking in size. Overall we have been very pleased with the results of the propranolol. To our knowledge, Caroline has had no negative side effects from the drug. Her blood pressure is monitored closely, and has always been within the normal range. The drug certainly has not been the "magic bullet" for us as it has been for some children, but Caroline didn't start taking it until she was 6 months old, after the period of most rapid growth for her which was in the first few months of her life. Unfortunately, treating hemangiomas with propranolol was still so new it was not even something our doctor was willing to consider for Caroline when we were first looking for treatment options when she was 8 weeks old. Now it is used extensively and in many case seems to be the first line treatment of choice by many specialists. Modern medicine moves quickly!
At our last appointment with the pediatric dermatologist, he suggested we move ahead with a consultation with a plastic surgeon. Caroline will at the very least need a series of laser treatments which will take care of the red area of her hemangioma and cause it to fade. Because the laser will only treat the first layer of skin, she may also need an additional surgery to actually remove the vascular tumor underneath the red area (this tumor is what causes it to look like she's got a small walnut under her skin). The appointment for the consult is scheduled for early May. So, very soon it looks like Zack and I will be facing some decisions about WHAT treatment Caroline will have and WHEN she will have it. The tricky thing about treating hemangiomas is that they are all different. Yes, this
should go away on it's own eventually. The question is when? The statistics are that 50% go away on their own by the time the child is 5, and 90% are gone by age 10. We have no way of knowing where Caroline will fall in this range. What we do know is that Caroline's hemangioma is particularly aggressive. She experienced rebound growth after being weaned from the steroids and the first round of propranolol, showing that her hemangioma was still growing well after the first year, which is not the usual course that hemangiomas take. My intuition tells me that hers will likely not be gone by five years old.
The decision to treat or "wait it out" is so individual, and I don't think there is a right or wrong choice. Parents differ widely on what they decide to do and there are a lot of different ideas about when and whether to treat. For us, our concern has been mainly for Caroline's psychosocial development, and because the hemangioma is on a very prominent area of her face, we want to be sensitive to the affect this might have on her. We almost can't go anywhere these days without someone asking about or commenting on her hemangioma. Most questions are very sensitive and I really don't mind providing the education. Unfortunately, we have also gotten some very rude comments and questions. Some days it seems that wherever we go we are destined to run into all the proverbial "foot-in-mouth" kind of people who say the dumbest things. It's these kind of days that I just want to rush her home and keep her there forever and protect her little heart. Caroline for the most part still seems oblivious. Our hope is that with treatment her hemangioma will be gone by the time she starts elementary school.
One thing I have learned is that when your child has any type of need that requires medical treatment, there is a decision to be made around every corner. In my professional life I've worked with parents who have had to make such monumental medical decisions for their children that it makes the choices we are faced with for Caroline
pale in comparison. But I think that regardless of the magnitude of the decision, we as parents still
agonize over all of them. It's our child. We love them beyond words. And we want to make the best choices we can that will affect their lives in the most positive ways. In the end all we can do is pray, ask for guidance, and hope we have made the right decision.
