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.
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.