Hemangioma

Our daughter, Sweet Pea, developed a large compound hemangioma on the bridge of her nose in the first several months of her life. Although at first we were content to just keep an eye on it and hope that natural involution would cause it to disappear later in her childhood, its size, location and type eventually caused us to seek treatment.

The day she turned five months old, Sweet Pea began a course of Propranalol, a medication that has been shown to significantly reduce the size and color of hemangiomas.  We hope that it will eventually cause her hemangioma to stop growing, reduce in size, and allow nature to take care of the rest.  

You can read about how we made our decision to treat Sweet Pea's hemangioma here.

Below are pictures to show the growth of her hemangioma from birth. We will also document her progress on Propranalol, as well as any other treatments she may have. Although there is a wealth of information online, it might be helpful to other parents going through a similar decision-making process to read about our experiences.

Birth -- very faint discoloration on the side of her nose near her eye

One Month -- much darker and a bit larger, but flat

Two Months -- larger and starting to become raised

Three Months

Four Months

Five Months -- Day 1 of Propranalol

Sweet Pea weighed 12 pounds 5 ounces when she started Propranalol, and we began her on a very small dose of .25 mL three times a day. Every week we increased her dose slightly until, after 4 weeks, she was taking 1 mL three times a day. We find it easiest to give to her in a bottle nipple: we measure the liquid out in a plastic syringe, then squirt it into an upside-down bottle nipple, and place it into her mouth. She sucks it down with no issues at all!

Fortunately, she has shown no negative side effects. Also fortunately, her hemangioma has not increased in size, despite this being a very aggressive period of growth for a typical hemangioma.

Unfortunately, after one month on Propranalol, the hemangioma's color and size have not improved much at all. It is slightly lighter. It is slightly paler in the center.  It might be slightly less bulbous. But these are fairly nuanced improvements -- she still has a thick, dark mark in the middle of her face. (Yes, the picture below shows a fairly noticeable improvement, but it is partially due to the light -- it is not so obvious in real life.) Her doctor is not discouraged, and I am trying to stay optimistic as well.

Six months old -- one month on Propranalol

Six and a half months old: we've consolidated her Propranalol into two doses a day, instead of three. Now she gets 1.5 mL in the morning with her breakfast, and 1.5 mL in the evening with her dinner. This is great -- it eliminates me having to wake her up at 11 pm for a dose!

Seven months old

Seven months old: Ophthalmologist confirms that the hemangioma is no longer blocking Sweet Pea's vision. Hooray! The puffiness has reduced enough that it's not an issue anymore.

Seven and a half months old: A plastic surgeon who specializes in infantile hemangiomas examines Sweet Pea and recommends an immediate series of laser treatments. His explanation for why we should do this now, instead of waiting until she's a few years old, is because earlier treatments result in minimal scarring, the hemangioma will be gone sooner, and she will not be traumatized by the procedure because she's too young to understand. But after conferring with our hematologist, we decide not to act on the plastic surgeon's advice. There's no medical reason to treat so aggressively, and if we give Mother Nature and propranalol more time to work, perhaps Sweet Pea won't need laser treatments at all.

Eight months old: Sweet Pea's hemangioma continues to respond, albeit very slowly, to the Propranalol. She weighs 14 pounds 10 ounces (tiny!), and her dose has been increased to 1.7 mL twice a day.

Eight months old

Nine months old

Ten months old: Sweet Pea weighs 15 lbs 12 oz, and her dose is increased to 1.8 mL twice a day. The hematologist continues to be optimistic about the hemangioma's slow response to Propranalol. We are getting close to Sweet Pea's first birthday, and around 12 months is when a hemangioma naturally starts reducing on its own. The doctor is hopeful that this natural involution, in conjunction with the drug, will yield more dramatic results in the coming months.  

Ten months old

11 months old

One year old: At just 16 lbs 9 oz, Sweet Pea is tiny (3rd percentile for her age). But she's healthy and doing well. Her hematologist continues to be happy with Sweet Pea's progress, and believes we are starting to benefit from the combination of her body's natural involution in addition to the Propranalol. For the first time, the hematologist thinks it's possible that Sweet Pea may not need laser therapy, that this hemangioma might continue to reduce enough on its own that it won't be very noticeable anymore. This is great news, even though it definitely doesn't mean she won't need laser treatments.

Her dosage will not increase any more -- she will stay on 1.8 mL twice a day until she is weaned off the medication.

12 months old

13 months old: Sweet Pea's hematologist believes that natural involution (reduction) has begun. Hooray! Unfortunately we have no idea how much involution will occur, especially since nasal hemangiomas are particularly stubborn. Since her response to Propranalol has been so slow and subtle, the hematologist wants us to wean Sweet Pea off the medication extremely slowly, so we will start now by just giving her 1.4 mL, twice a day.

13 months old

14 months old: After one month on a slightly reduced dose of Propranalol, there has been no rebound growth of Sweet Pea's hemangioma, and she has experienced no side effects from the lower dose. Yay! We will reduce her dose further, to 1 mL twice a day, for another month.  She weighs 16 lbs, 13 oz.

14 months old

15 months old: Since the weaning so far has caused no problems and there has been no rebound growth, Sweet Pea's hematologist has cut her dose in half -- just 1mL per day. Interestingly, Sweet Pea's appetite has greatly increased. She now frequently eats more than her twin brother, who is much larger than she is. I have heard anecdotal reports from other Propranalol parents that their children also experienced increased appetites after coming off the drug.

15 months old

16 months old: Sweet Pea is no longer on Propranalol! On December 26th, 2013, Sweet Pea took her final dose. She was on the drug for 11 months. Overall, we are satisfied. We didn't experience the kind of dramatic results that many Propranalol patients do, but there was significant improvement. And although the hemangioma is still there, and still very apparent, it is much smaller and lighter than it once was.

16 months

Our plan going forward is twofold: 

1) Wait and hope that nature will take effect and further reduce Sweet Pea's hemangioma over the next few years.

2) When she is 3-4 years old, discuss whether laser therapy is necessary. Our goal is that the hemangioma is gone by the time she starts school. I suspect she will need at least some treatment, but hopefully due to the Propranalol and Mother Nature, any laser treatments she needs will be minor compared to the treatments she would have needed 11 months ago.

18 Months

2 Years

3 years

4 Years

5 years

Five Years: We had hoped that Sweet Pea's hemangioma would resolve by the time she started elementary school, but it has not improved since she came off the Propranalol at age 16 months. It is still pale, and now slightly recessed, but it is definitely still there. People usually assume it's a scab or scrape, and frequently ask her, "What did you do to your nose?" Sweet Pea thinks it's funny and recently told me, "I like my red spot!"

6 years

7 years

Eight years: Sweet Pea told me, "It's so annoying that people always ask me what happened to my nose!" I was very honest with her, telling her that she can have laser surgery if she would like, but I also explained that she would need anesthesia, that it would be a little uncomfortable until it healed, and that she might always have a small/pale scar. She thought about it for a few minutes, and then said no -- she'll stay the way she is for now. But she is starting to consider her options. We've told her it's up to her, and that we'll support her either way.

8 years