Posted by: little sprout creations
May 12, 2011
Updates below (as of May 9. 2014).
My Little Sprout, Leah, is featured in most of the Creating with your Little Sprout posts. Aside from her super-cuteness and amazing accessorizing abilities, you’ve probably noticed a red bump on her forehead. In honor of Hemangioma Awareness Week, I thought I’d take this time to explain a bit of what we know about hemangiomas, and about our family’s journey.
Leah was born with a strawberry hemangioma (he-man-jee-oh-ma) on her forehead. I actually didn’t really even notice it until we got home from the hospital because she was wearing a hat most of the time, and if I did see it, I probably just thought it was something temporary that happened during labor. It wasn’t until her pediatrician brought it up at her 1 week checkup that I realized it was more than just a slight bruise. Also, this is a testament to the fact that childbirth and the days following are so head-spinningly crazy that a doctor had to tell me that there was a big red mark on my daughter’s head.
Her pediatrician told me that although it was small and flat now, it would mostly likely get bigger and redder and stick out more. He made it sound like it would get a lot bigger and a lot redder, but I think I either didn’t believe him, or thought he was exaggerating, or that I just wouldn’t care. To be really honest, I think if I had known that day how big and red it would get eventually, I would have freaked out. I know that I wasn’t nervous then, because I barely brought it up when I talked to my husband after the appointment.
In the weeks following, it started to get bigger and redder as predicted, but since I saw her beautiful face everyday (and she still wore a hat most of the time) it was hard to notice just how much bigger it was getting. I think I also weirdly assumed that it couldn’t possibly get much bigger, even though I had googled and read extensively about hemangiomas, and, being a biochemist in my pre-mommy life, I understood fairly well what was happening and what would continue to happen. Below is a 5 month progression of Leah’s hemangioma, during the growth phase. You can see in the first picture why I barely noticed.
In the next section, I’m going to tell you what I, Jen St.Clair, know of hemangiomas. This is to serve as a simple primer for those who know and love kids with hemangiomas, or happen to see a kid at the park with one, and want to understand generally what it is. If you want to know more, I encourage you to read the links at the bottom. And if you have a child with a hemangioma, please take the time to read some of the current studies, and do your own research for your family. I’m a scientifically-inclined mom, but I’m not a doctor, and research is changing constantly. Also, if you’re in the Seattle area and would like physician references, please contact me using the form below.
A hemangioma like Leah’s is a mass of tissue and blood vessels. They aren’t well understood in terms of why or how they form, but are painless, usually harmless (depending on where they’re located), grow rapidly for about 6 months to a year, stay around for a little while, and then subside on their own (they call this “involution” in the medical community.) Many people say that 50% of hemagiomas involute (without treatment of any kind) within 5 years, and 90% involute within 9 years. The tricky thing here is understanding how much involution is likely to occur. When I first heard the involution rates, I assumed that meant that unless Leah was the unlucky 1 in 10, her birthmark would be totally TOTALLY gone by the time she was 10. This might be, but is not always the case. As a note, I have a hemangioma behind my ear. It was never as large as Leah’s, but now, as an adult, even though mine has fully involuted, it’s still slightly pink and the skin is wrinkled from being stretched at one point.
Leah’s pediatrician recommended that we see a dermatologist, to see what they’d recommend as far as treatment, if any, and to make sure that her hemangioma looked healthy and wasn’t affecting any of her body’s systems. We saw a dermatologist at Seattle Children’s who checked Leah out (everything looked healthy and wasn’t affecting any systems – some children have them on their eyes or mouth and can affect vision or breathing.) Although Leah’s did make her eye sag a bit, it didn’t affect her vision. She took some measurements and photos to use as baseline measurements for future appointments, and ran through a few options with told us:
1. Just wait for it to involute on its own.
2. Steroids. I know actually almost nothing about this, so if you’re interested, check it out for yourself.
3. Plastic Surgery. (This seemed a bit extreme to us for a cosmetic issue that would probably go away on its own.)
4. Laser. (This would remove the color but not the puffiness. Also seemed like overkill for a non-pageant-queen toddler.)
5. A new treatment using a blood pressure medication called propranalol (pro-pran-a-lol) to help speed along involution. This was a surprise discovery, when a child with a hemangioma was hospitalized for heart issues, given propranalol, and the hemangioma started to involute.
At the time of our first appointment, the treatment itself was new (and I was a really nervous mother), so we decided to wait it out for 12 months and see how things looked (both Leah’s hemangioma and propranalol research.)
Within that year, a lot changed. Leah’s hemangioma got bigger. And most importantly, she started to play at the park, where questions and comments about “that thing on her head” came at us constantly, from curious kids and moms alike. At 12 months, Leah still didn’t have a ton of hair, which meant that there was nothing to cover up her birthmark, other than a hat. Fortunately, her love of accessorizing with hats helped protect her from the sun and from an excessive amount of staring and pointing. At our next appointment, we measured, photographed, and discussed the propranalol treatment again. Luke and I went home and for the next 6 months, read, thought, prayed and talked about what we should do.
Next stop was an appointment with a dermatologist who specializes in pediatric hemangiomas, who had been recommending the propranalol treatment. After checking her out, the doctor told us something we hadn’t heard before – that Leah’s hemangioma was so large (in terms of sticking out from her face) that even if it fully involuted, it probably stretched her skin out to a point that it would probably sag a fair amount. She told us that we could absolutely let nature run its course – it would most likely involute (she could tell that it was slightly starting to already) but that teenage Leah would probably want to have some cosmetic surgery done to get rid of the extra stretched skin. Her suggestion was to try the propranalol blood pressure medication, in the hopes that it would involute the hemangioma faster, meaning less stretched skin, and hopefully decrease the need for plastic surgery down the road. If we needed to remove any remaining redness, we could do that easily with laser treatments, and if we needed to do plastic surgery, it would be on a much smaller area, meaning less scarring.
We went home and did more reading, thinking, talking, and praying. On one hand, we wanted to teach Leah that appearance really doesn’t matter, and on the other hand, we worried that in 20 years, she’d be sad about how she looked, and wonder (read: be mad at us about) why we didn’t take care of it for her. I was also really starting to get annoyed with the ridiculous amount of comments/questions/unwanted advice we got about it. I desperately wanted to help Leah to see that this was just a normal part of her, but to the people around us, it wasn’t normal. I started to get sick of people pointing their fingers 2 inches from her face, face contorted into the international yuck face asking “excuse me but what is that?”
We decided to go for the propranalol treatment, and went to Seattle Children’s Hospital on January 13, 2011, for the first dose. It was a long and stressful one, although hardly stressful compared to many of the other families at the hospital, I’m sure. They had to do an EKG to make sure that Leah’s heart was healthy enough to handle the blood pressure lowering medicine. After the first dose was administered, we had to come back hourly to check her blood pressure and heart rate. Leah hated the blood pressure cuff, and woke up with a nightmare that night about “the squeezy bracelet.” At the end of the day, we headed home with a bottle of propranalol, a stethoscope to check heart rate at home, and instructions on how to administer the medicine orally, 3 times a day. Took some getting used to, but not a big deal.
We checked back in at our dermatologist a few months later and she was blown away by how well it was working. She took some pictures, and we compared the pre-treatment pictures. Check out the pictures below – it was so much less red, and much much flatter. (Updated 5/10/2014: the “current picture below is NOT current.)
Update: After 12 months of treatments with propranalol (and a move to the SF bay area) we began seeing a dermatologist at Lucille Packard Children’s Hospital at Stanford. Leah’s hemangioma had gotten a bit smaller in size, but the skin had been stretched so much from the prior growth that it was left sagging, and the color remained. Our new dermatologist recommended either laser treatment (which would remove the redness but leave the sagging skin and remaining puffiness) or plastic surgery to remove it completely. She left the decision up to us, but advised that Leah would likely want to have it removed at some point in her life. Again, after much thinking, talking, and praying (were we really considering non-essential cosmetic surgery because of the way our 2.5 year old looked?) we opted for the surgery.
The surgery itself was a breeze. Lucille Packard Children’s Hospital is amazing, and they took good care of both of us. I was surprised to see how much bandaging she had, but she dealt with it like a champ.
We’re two years past her surgery and could not be happier with our decision.
Have questions? Feel free to ask in the form below, or email me at firstname.lastname@example.org. We’re happy to answer any questions that you have about life with hemangiomas, or even questions like “If she cuts it, does it gush blood?” (The answer is no, no more than any other part of her, although it will scar more easily than other parts of her, so we do need to be careful about her scratching it, etc.) We’ll defer to the doctors for the medical questions though, or point you in the direction of some great medical articles.