Hemangiomas

Some of you may have seen pictures of my daughter and wondered what was on her face. It is called a hemangioma and I am happy to say hers is harmless.

When the twins were first born, they seemed absolutely perfect which was such a relief. Over the next few days, we noticed a light pink mark on Serena's cheek. We thought maybe she was just bruised during delivery. The pediatrician didn't even notice it at her first appointment. Over the next couple of weeks, it started to grow larger and darker. When we took her in for her 2 week appt, the doctor said it looked like a port wine stain, which is basically just a flat red birthmark that usually fades away. It was still small, so we weren't terribly concerned, but she did refer us to a pediatric dermatologist.  By 4 weeks, it had become very dark red, puffy, and large. We then first heard the term "hemangioma."

A hemangioma is a buildup of blood vessels underneath the skin. It's considered a benign tumor and can be superficial or underneath the skin. They grow in size and get darker for about the first year then they'll slowly start to shrink and sometimes go away completely within a few years.  Treatments include laser therapy to help reduce the red pigment, corticosteroids and beta blockers to make them stop growing, and finally surgical removal of the hemangioma. Of course, these all come with their own side effects and warnings since such a young child is involved. I've read that around 10% of caucasian babies get them with females being 3x more likely to get them than males, and multiples also more likely to have them. Of course, most hemangiomas are smaller than Serena's and usually not in such a prominent area.  Hers is a pretty severe case, but we are thankful it is not in an area where it could be dangerous like near her eye, nose, or even internally.  (**Thanks Alycia for letting me borrow some of your language here!!)

Serena's dermatologist decided to start her on propanolol, a beta blocker that has had great success in shrinking hemangiomas. Since it is primarily a heart medication, she had to have an echocardiogram before she was able to start. She began taking propanolol when she was 5 weeks old. We were really hopeful and looked every day for signs of progress, but unfortunately we didn't see any changes. Since her H is still in growth phase, it is likely that the medication is stopping it from growing, but not helping it go away. At this point I started doing my own research, and discovered a website dedicated to these types of birthmarks (www.birthmark.org). From that site I reached out to a vascular birthmark specialist, Dr. Gregory Levitin, who is based in NYC.  He's actually from Greensboro, NC originally, which is about 45 minutes from where I grew up, so I liked him right away :)  He also has twins, one of whom had a hemangioma. This is what spurred him to go into this field. After sending him a photo and talking to him on the phone, we decided to take Serena up to see him in person. You can read about that trip in my blog post below.  Bottom line is that he thinks that she is a great candidate for surgery, and the scarring would be minimal. It's hard to accept that your child is going to have any facial scars, but it's definitely better than what she is dealing with now, so we are hopeful. We are going to do a couple of laser treatments first with our dermatologist here in DC, and then when she is a few months older, we will take her back to NYC for surgery. Til then, we continue the propanolol and hope that it doesn't grow any more!

I have to say, I am somewhat self conscious when we take the babies out in public. I actually don't even notice the birthmark anymore when I look at her, but when I see others notice it I can see the look in their eyes thinking what is wrong with that baby? I actually prefer when people ask about it, so that I can clarify that it's harmless and she isn't in pain from it. It's tough seeing the pity in people's eyes, I want to make a sign saying that she is just fine, don't worry! 

Her brother Milo has his own little issue (I'll write about that another time), and may soon have to wear a helmet to correct it. As if we don't get enough attention already being twins and with Serena's birthmark, we'll really get stares then :P

I just want to emphasize how absolutely lucky we know we are that our children are overall healthy and that their issues are not life-threatening. They may cause us to have a few more doctor appointments, but I know it could be much worse and I am so happy to have these two little monsters, even when they are screaming their heads off at 3am!

Now, of course I couldn't have a blog post without photos...



Serena's hemangioma progression:



5 days old



5 weeks old - started propanolol
  



2 months old - ulcerated area at its worst




3 months - ulcerated area healed. On propanolol for 9 weeks.