I’m sharing something a little different on my blog today. My daughter was born with a hemangioma under her left eye. I’m guessing that most people have little to no idea what this is…I sure didn’t at the time! Five years ago, when I was searching online for more information, I wish I would have come across a post like the one I’m about to write. I’m hoping that by sharing my experience and progress photos of my daughter’s own hemangioma, I can put some parents at ease and help educate others who are unfamiliar with what this is.
Shortly after my daughter was born (she is now 5 1/2), we noticed that she had a red mark under her left eye that wouldn’t go away. We didn’t think much of it until her pediatrician pointed it out at one of her regular well-visit checkups. He told us it was a hemangioma and that it was quite common, especially among baby girls that were born early and were a low birth weight. Yep, that fit our daughter’s description. She was just 5 lbs 5 oz when she was born at 37 weeks. (I was induced because my OB doctor was concerned that because she was measuring so small, she might not be getting enough nutrients from me anymore.)
So, what exactly is a hemangioma? Well, the Mayo Clinic gives this definition on its website:
“A hemangioma (he-man-jee-O-muh) is a birthmark that most commonly appears as a rubbery, bright red nodule of extra blood vessels in the skin. Sometimes called a strawberry mark, a hemangioma grows during the first year of life, and then recedes over time. A child who had a hemangioma during infancy usually has little visible trace of the growth by age 10. A hemangioma can occur anywhere on the body, but most commonly appears on the face, scalp, chest or back. Treatment of a hemangioma usually isn’t needed, unless the nodule interferes with vision or breathing.”
Our pediatrician told us that it would shrink over time and there wasn’t much we could do, other than just keep an eye on it. He was a little concerned about it’s location since it was right under her eye and could interfere with her vision if it got too big. At this point, it was still small so we didn’t worry too much. However, over the course of the next few weeks, it grew quite rapidly and even started to look “bruised” and purple underneath the skin. At our next well-visit, the doctor was surprised at how quickly it had grown since the last visit and referred us to a pediatric dermatologist. After over a week of waiting to get in (long story), we finally met with a doctor at the Indiana University Medical Center in Indianapolis. She was also concerned about it’s location near our daughter’s eye and decided to put her on a medication called Propranolol, which is a beta blocker usually used to treat hypertension, anxiety, and panic. I don’t remember many of the details anymore, but I know that propranolol had JUST started being used to treat hemangiomas within the past year. The medication had shown really great results in almost all of the infant patients it was being used on and, actually, if I remember correctly, it was one of those ‘accidental findings.’ There was a baby that was being treated with propranolol for one reason or another, but also happened to have a rather large hemangioma. Shortly after starting the medication, they saw a great reduction in the hemangioma’s size. Even though it was a new treatment, the doctor felt it was a much safer alternative than giving our daughter steroid treatments (which was the only other option and what had been used in the past). Of course, we agreed with that. Steroids have a lot of potential negative side effects when given to small children, so we were definitely happy that there was another option we could try, especially one with such promising results.
We had to take our daughter in for quite a few blood pressure checks while starting the medication and also while weaning her off of it. We were also told that we’d have to wake her up to feed her every four hours around the clock (due to the medication). Telling this to a new parent who JUST started getting stretches of sleep longer than 5 hours at a time…well, it was a bit crushing. However, we knew this was the best path to follow and we were glad to finally be doing ‘something’ for the hemangioma. It was getting so big and we were definitely concerned about her vision being blocked (plus, we didn’t know how much more it would grow before it finally started to shrink). She did great adapting to the medication (three times per day) and around the clock feedings. In total, she stayed on propranolol for about a five month period.
Anyway, with all of that said, the reason I wanted to share our story is because I wish I could have found something like this (with pictures) online when I was searching for them over 5 years ago. The only pictures I found were of severe cases and I often didn’t see many follow up pictures. I had planned to write this blog post eventually, but a friend of mine was here visiting from out of town recently and his daughter also has a hemangioma. I recognized it right away and I think they were surprised that I knew what it was. I reminded him that my daughter had one (he had forgotten) and we both agreed that not enough people know what a hemangioma is…so, I realized I wanted to share this post sooner rather than later. I showed them pictures of my daughter as a baby and they were able to see how much it has faded now. As a parent, especially of a baby girl, I think it’s reassuring to see that a large red mark on your kid’s face will eventually fade away and not be as prominent as it is right now! I’m hoping that by sharing these progression pictures, I can reassure a few other parents out there. It really is pretty cool to look back on these now, but I admit that at the time, it was a little nerve wracking. We wondered what was going to happen as she got older, how long it would take to fade, would she be made fun of or picked on at school, etc. Luckily, it has now faded so much that you would only notice it if you actually looked for it!
This first picture was taken the day she was born. At the time, we didn’t pay any attention to the red mark under her left eye, but looking back, we realize it was there all along.
A few days after we got home from the hospital, we were still unaware that this was a hemangioma.
I think around this point was when the pediatrician told us what it was, but that there was nothing we could do.
This next picture is when we started to see a lot of growth underneath the surface. You can see that it’s a bit purple.
This next picture is the hemangioma at it’s “worst.” It was taken right before we started giving her propranolol. And you can see how it could interfere with her line of vision, especially if it continued to grow any further.
I think this next one was taken after she had been on the medication for several weeks. (We started seeing a reduction in size within the first week.) The purple swelling has gone down and it’s become more flat. She’s about 5 or 6 months old in this picture.
Ok, so this next one is just a cute picture of my daughter. I couldn’t resist! 😉 You can see that her eye is looking better, though, and it’s not blocking her line of vision as much.
Now the raised, red marks are starting to fade. This is right around 9 months old. (She came to watch me run my first official half marathon.) 🙂
This is taken around 11 months old. Not a whole lot of progress, but at this point she had been off of the medication for a couple of months.
17 months…it was really starting to become less noticeable at this point.
Probably about 18 months old here (when she finally started walking…and I do mean finally)! 🙂
This one was taken at her 2nd birthday party. (It was also right before my twin boys were born…and the end of our quiet, peaceful days together!) You can see how much it has faded at this point.
This one was taken around 3 1/2 years old.
And this final one was taken just a few months ago at her 5th birthday party. If you look, yes, you can still see it under her eye…but I highly doubt anyone ever notices it anymore.
I’m extremely happy with the end results. We are still following up with an eye specialist because she may have had some early bruising from the hemangioma that affected her eye muscles. Her left eye doesn’t seem to be able to go up as high as her right, so occasionally her eyes don’t ‘work together.’ This is called Brown Syndrome. We’re hoping over time she’ll learn how to control it better, but for the time being, we just monitor it once or twice a year. Thankfully, her vision is excellent and she sees equally well out of both eyes.
If you know of anyone that has a baby with a hemangioma, please share this with them. I would have loved to see more progression pictures like this when my daughter was a baby. Her hemangioma grew so fast and it was definitely a little worrisome to us.
If you are reading this because your baby already has a hemangioma, please watch it extremely closely in the beginning, especially if it’s near an eye. I look back now and wonder if we would have treated it from the very beginning (before it started to grow so rapidly), would she have the eye muscle issues she has now? It’s hard to say. Just know there are options out there and talk to your doctor right away if you see rapid growth. Don’t wait a week (or more) until the next scheduled appointment, like we did.
I hope this helped someone!! Did you or anyone you know have a similar experience? I would love to hear about it in the comments below.
Update 1/22/16 – It’s been two years since I wrote this post, so I thought I would share a little update. This is a very close up picture of her eye at 7 years old. You wouldn’t notice it unless you were LOOKING for it. We are very pleased!
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