Last year, we were navigating our baby’s infantile hemangioma on her eyelid and trying to decide on the best course of treatment. Because of the location of the hemangioma, we were advised to consider medication, including propranolol—but ultimately chose to try a topical gel instead.

Today, I wanted to share an update on how things unfolded, what we experienced, and where her hemangioma is now.

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Our Infantile Hemangioma Journey

Because hemangiomas can grow rapidly in the first year of a child’s life and Dakota’s developed on her eyelid, the vascular plastic surgeon we were referred to warned us that if Dakota’s hemangioma grew and we didn’t treat it, she could easily become blind in that eye.

It was a scary thing to consider. The treatment was also a scary thing to consider. Dakota was prescribed a beta blocker called propranolol. The doctor told us about all the side effects for our months-old baby: sleeplessness, potential ER visits for low blood sugar, reflux, fussiness, and low blood pressure. We also had to be trained to take Dakota’s blood sugar and would have to wake her up every few hours to try and prevent a drop in her glucose levels.

It was a lot. We knew the propranolol would stop the growth of the hemangioma, but we were freaked out by the side effects. We filled the prescription, went home, and did some research and lots of praying. We joined a support group and honestly learned so much. Almost everyone we talked to said their child had major side effects from the medication, but that it helped their hemangioma fade.

We were looking at having to give this medication to Dakota for at least the first year of her life, along with measuring the growth of her hemangioma, and visiting a pediatric ophthalmologist regularly to check her vision.

Choosing a Different Path

We decided to get a second opinion from the ophthalmologist. He said her vision wasn’t impacted yet, and was willing to prescribe a topical beta blocker that would have less side effects.

We went the route of using the topical beta blocker for a few months and didn’t see much of a difference. So, eventually, we stopped using it and held our breath.

We fielded calls from the vascular plastic surgeon’s office telling us we were making the wrong choice and that Dakota could quickly go blind because of how fast hemangiomas grow. We listened to our pediatrician tell us that we should follow the vascular doctor’s advice. We read about horror stories in the support group. We prayed.

We dutifully measured Dakota’s hemangioma and sent the required monthly photos to her doctor… and we had success because it stayed the same. It didn’t shrink. It didn’t grow. It just stayed steady. Her vision was fine and we avoided the oral medication.

The Weight of Making Medical Decisions for Your Child

We knew a few weeks of the propranolol could make the hemangioma fade away completely (and then re-grow if we stopped it before she turned one), but we weren’t excited about the side effects. And you know what? It was hard.

It’s hard to make decisions for your baby when they can’t tell you what they want. We couldn’t ask our three month old…

“Hey, Dakota, do you want to try this medication that will make your hemangioma go away, but will probably land you in the ER a few times, make you throw up constantly, interrupt your sleep, and make you fussy?”

OR “Hey Dakota, do you want to avoid this medication… but have a mark on your eyelid—possibly for years or forever—and deal with comments from people?”

I have always prided myself in not caring about how I look or what people think about my appearance. I very humbly realized it’s a totally different thing when people comment on my child’s appearance, though.

If I had a dollar for every time a stranger mentioned Dakota’s hemangioma, I could probably fund a research project for a new treatment for it!

“Did someone scratch her eye?! Mommy, you need to clip her nails!”

“What happened to her eye?”

“Is that marker?”

“Did she bump into a table? Time to baby proof better!”

“Did her siblings hurt her?”

“Will that go away?”

If my heart ached each time I fielded all those comments and questions in the first year of Dakota’s life, what would it be like for her? What will kids say to her? Will it be the first thing people see when they look at her? Our family doesn’t notice her hemangioma because she’s just Dakota. It’s just part of her. Our neighbor and family friend, Bernadette, called it an “Angel’s Kiss” and I never forgot that. It’s her special mark.

We forged ahead, against the plastic surgeon’s advice, against the pediatrician’s warnings, and found our own way. Were we making the right decision? I don’t know. I still don’t know because I feel like it’s kind of up to Dakota.

We simply prayed and trusted God. The past year has been a fast track for personal growth for me. The comments, the fears, the questioning my own decisions—it has all launched me straight into prayer. Our other two children have had almost zero health issues. To go from yearly check ups for our big kids to constant appointments for Dakota has been such a switch. It has given me a lot of empathy for parents with children who have much more difficult health situations than our youngest. I have learned never to take our children’s health for granted.

What Happens Next

We made it to Dakota’s first birthday and vascular plastic surgery follow-up appointment. This would have been the appointment to discuss weaning Dakota off of propranolol. Instead, we discussed the future.

The doctor told us that Dakota’s hemangioma should start to fade and flatten, but it could take years or never fully go away. We were told we could wait until somewhere between age 3-5 to see if we want to move forward with general surgery or laser surgery.

General surgery would leave a straight scar on her eyelid instead of the hemangioma’s shape. Laser surgery would only lighten the color of the hemangioma. Both would require anesthesia. Thankfully, we know she doesn’t have a bad reaction to anesthesia from her ear tube surgery!

Another option would be to wait until Dakota is a bit older—like tween or teenaged—and let her decide what she wants to do in terms of surgery or letting her birthmark remain. The doctor broke my heart when she said that she sees kids feeling embarrassed and wanting to hide their hemangiomas as young as age three. She said the bullying tends to start around school age. That’s exactly why I wrote What’s True About You.

Regardless of what we choose, we have a few years to think about it. We’ve already noticed the hemangioma lightening a bit lately. In the meantime, Dakota will need to have regular vision checks.

What Dakota’s Hemangioma Taught Me

I don’t know what the future holds, but I know Who holds it. Maybe Dakota’s hemangioma will disappear, maybe she will want surgery to remove or lighten it, or maybe she will want to keep her special mark.

Somewhere along the way, this journey stopped being just about a hemangioma and its treatment. It became a story about surrender. About learning that parenting means making decisions with the information you have and then leaving the outcome up to God.

I’m learning that I can’t protect my children from every hard thing thrown at them. I know fear can feel loud, but prayer is much louder. For months, I looked at my daughter and worried. Now, I don’t see a diagnosis or medical decision. I just see Dakota and her sweet “Angel’s Kiss.”

And whether it fades completely, stays forever, or changes over time, I don’t think it’s the first thing people will remember about her. I think they’ll remember her smile and sweet soul. 💛