Hemangioma

I have avoided writing about the hemangioma here, because it was a sensitive topic (not for the reasons you’re thinking) for awhile, so I just left it alone.

However, I want to write about my experience now, in the event some other Mom or Dad is interested in how to go about/what to expect if their child were to have a hemangioma – especially in a noticeable place like your child’s forehead.

Here’s the synopsis:

Elle was born with this mark on her head. It looked like it would be a ‘stork bite’ or ‘strawberry mark’ or ‘angel kiss’. Whatever, a mark she had from birth.

It continued to grow over the first three months of her life. Shortly after she was three months old, even though our pediatrician said ‘oh, it’s fine, she’s perfect’ (which, by the by, is why we no longer visit that pediatrician’s office) it continued to grow and was pushing on her eye and making her look – quite bluntly – on her way to becoming a cyclops with only one eye open.

Whatever.

But, then I began second guessing myself. My friend Kathleen’s daughter also had hemangioma and Kathleen had been gently nudging me to see the specialist that she and her husband had FINALLY managed to get to after a similar ‘don’t worry, she’s fine’ approach from multiple pediatrician’s.

Ultimately, the straw that broke the camel’s back for me was when I asked my Uncle, Craig, for his opinion. He’s an interventional radiologist in Salt Lake and I wasn’t entirely sure if he’d have any advice. But, as I knew he would, he asked a friend of his who’s the head of pediatric dermatology at the University of Utah.

“Get on propranalol, if it’s anywhere near the eye, no reason not to,”

“What about side effects?” I inquired, as our pediatrician (the one we don’t go to anymore) had referenced.

“There really aren’t any,” I’m told. “Cardiologists prescribe this like it’s water – there are very few side effects.” (I have minced words here, so don’t take this as medical advice).

So, I make an appointment with Dr. Shwayder at Henry Ford in Detroit. It’s an hours drive, but he’s the guy when it comes to this. The best. You look at his resume — undergrad at Harvard, residency in pediatrics at University of Michigan. Yup – I’m good with his education.

Anyway, we go for our first appointment and this specialist – who is the best, I wish all doctors were like this – reviewed Elle’s hemangioma, pulled up the New England Journal of Medicine on the computer in the evaluation room and showed us the research on using propranalol, and the effects on the child in the study who they had photos of – it was amazing.

He then ripped off a piece of paper and said “Here’s the plan.” which I loved.

#1: Don’t Panic.

#2: Send Elle to a pediatric eye specialist to ensure the hemangioma is not growing into her orbit/onto her eye ball.

IF so, then schedule an MRI to evaluate.

#3: Begin propranalol at half dosage = 0.5 mL per dose, three doses per day.

This photo was taken just five days prior to our initial visit with Dr. Shwayder:

It’s crazy to me to look back just three months ago at how much the look of her face was being affected by the hemangioma.It had also begun necrosing – breaking down – in the middle, which is what that purple spot in the center is.

We went to the pediatric eye doctor – good news, it was not growing into her orbit or affecting the growth of her eye in any way. They dilated her eyes and everything, and it was all good. Relief!

We begin the propranalol, and here’s what it looked like one month later:

Her eye was opening back up and the hemangioma itself was not nearly so angry-looking with all its blue veins running into itself, all the blood flowing directly to that area.

By five months (just one month ago) here’s another look:

Still quite red and with slight swelling (you can still see to the left of it, how it’s raised a little), her eye was even less affected and the swelling was nearly gone.

By six months, here’s a look:

No longer red and angry, this photo was taken after our third appointment with Dr. Shwayder. He increased the dosage from 0.5 mL to 1.0 mL three times per day and said that the progress (regression?) of the hemangioma was ahead of schedule.

All excellent news.

In short, we’re well on our way to the thing being very nearly gone. Increasing the dosage to 3/4 of a full dose over the 1/2  of a full dose has made an incredible difference.

If you happen to have stumbled on this post because your baby has a hemangioma somewhere — insist on a PEDIATRIC dermatologist (not the botox doctor) and get on the medicine if it makes sense for your child. For us, it means that Elle – who older toddlers already point to her eye and say “Boo Boo” – won’t have to contest the way she looks at school. We won’t have to wait for the birthmark on her face to go away on its own terms — by the time she’s one, there will probably be very little left of the mark itself.

I’ve struggled a bit, certainly, with giving in to some type of peer pressure/societal pressure to have a ‘pretty’ child or so that my child isn’t ‘different’. I want her to embrace all the ways that she is the same as AND different than people…but I wasn’t willing to let her eyesight be affected, let the way that people treated her as an infant be different. Already, I wonder if she’ll be proud of the fact that she had this as a baby — like a badge of honor — or if she’ll wish I hadn’t taken so many pictures of her with it (and then posted them incessantly on facebook).

I don’t know – those are my struggles to bear and I do that because the alternative is doing nothing — and if she had any other sort of condition, I’d be seeing a specialist about that, so I’m ok with our approach on this one.

People will make comments – just last weekend a guy said “wow, your baby really fell and hit her head, huh?” and I just said ‘no, it’s a birthmark’. You learn how truly insensitive some folks are — or how comfortable within their own skin they are to be able to state the obvious rather than just stare.

I’m most glad that we are allowing Elle’s personality to be the center of her existence — and it’s a delightful one at that — instead of constantly battling the ‘what’s that thing on her head?’ line of questioning.

Anyway — there’s our little hemangioma story. Heman. Gioma. Came to stay with Elle for awhile and now he’s on his way out. I encourage anyone struggling with seeking treatment to do it — totally, totally worth finding a great specialist and the best treatment.

 

 

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6 thoughts on “Hemangioma

  1. I have two things to say. #1- Good call. Regardless of how others thinks it looks, it does look like it was affecting her eye (not being able to fully open it for full use of her eyesight). #2- Elle is absolutely beautiful. I don’t even notice it on her because her beauty just shines through! She really is perfect!

  2. I googled hemangioma and your blog came up. Thanks so much for your candid post. Our daughter was diagnosed today with a hemangioma in a similar location. I will not hesitate to see a specialist immediately based on your information. I really feel much better about it and your Elle is a beautiful girl! Thank you! Erica

  3. Our daughter Avery, has a similar hemangioma about two inched behind her right eye. Our pediatrician initially said the same thing, “as she gets older it will shrink and move back into the scalp and become a freckle” At 18 months old we went and saw a specialist and he put her on propranalol. It has now been 6 months and the results are amazing. With no visible side effects the hemangioma has almost flattened out and is no longer red/vascular. Good luck to Elle, and thanks for the blog!

  4. Pingback: What Is a Birthmark and How Does Birthmark Removal Work?

  5. Thank you for this post. My son has a similar hemangioma on his eyebrow. We are seeing the doctor this week about it and I will definitely request a specialist referral.. Given how I’m reading this post several years later can you give an update?

  6. My baby girl has a hemangeioma on her cheek, it was also pushing her eye shut is why we sought treatment. She was on Atenolol and it helped some. We switched doctors after we moved and she was put on propanol but didn’t do well with it. We decided to just let her be and let it subside by itself for now and maybe if it regress any we can look back into medication. Thank you for this post and yes, I completely understand and get the comments or states people give my baby.

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