The doctor walked into the exam room of the vascular anomalies clinic at the hospital and introduced himself to us before turning his attention to Dakota.

“I don’t like where that hemangioma is,” he stated. “If we don’t treat this, it can grow and cause her to go blind in that eye.” Those words started our journey of treating Dakota’s hemangioma.

When Dakota was born, she had no sign of a hemangioma on her eyelid. Most people call them a birthmark or even a cute name: a strawberry. Hemangiomas are benign tumors of blood vessels on the skin. The type that Dakota has, an infantile hemangioma, shows up shortly after birth, grows during the first year of life, and then fades. When Dakota was about a month old, she got a red mark on her eyelid and we thought she scratched herself. Then the mark became more pronounced, red, and raised off of her skin.

“What’s wrong with her eye?” kids questioned when they met her. “Did she scratch her eye?” adults asked. “Oh, it’s just a birthmark!” we would reply.

During her two month checkup with her pediatrician, the first thing the doctor said when she walked in the room was “Oh, she has a hemangioma. I need you to take Dakota to a specialist as soon as possible.” 

This confused me. If the birthmark would just fade, what was the big deal?

The vascular plastic surgeon we were referred to told us that the location and rapid growth of hemangiomas was the problem for Dakota. Because hers is on her eyelid and it is continuing to grow, it will reshape her eye, cause astigmatism, and can blind her in that eye because if a developing baby’s eye isn’t exposed to light (like from being unable to open due to a large hemangioma), it won’t develop sight.

“This is as close to an emergency as you can get,” he said.

Jimmy and I sat in the clinic as the doctor told us that the first line of defense to treat hemangiomas is a drug called propranolol, which is a beta blocker.

We listened as the doctor told us we would need to be trained to take Dakota’s blood sugar and keep glucose gel with us at all times because propranolol can cause low blood sugar. He told us many other side effects like low blood pressure, reflux (to which he said “We can give her a medication to treat that if she starts losing weight” 🫠), fussiness, and the most common: sleep disturbances. On top of sleeplessness, we would have to wake her up every six hours to eat due to the blood sugar issue. Any low blood sugar readings would warrant an ER visit.

I looked down at my two-month-old sleeping in my arms–perfect in every way–and just tried to take it all in. The doctor told us we would need to see a pediatric ophthalmologist on a routine basis to check on her eye. We would need to measure her hemangioma and send pictures to him frequently. Her medication dosage would need to be adjusted as she grows and she would need to take propranolol for at least the first year of her life.

If the hemangioma didn’t shrink, we would have to venture into more serious medications and treatments including laser surgery. Because she is two months and the hemangioma is in the “growth stage” it will simply grow back if we were to stop the medication.

After a nurse gave us prescriptions for the propranolol, glucose gel, lancets, glucose meter, test strips, and more information, we walked to the hospital pharmacy and waited. It had been a long day and the pharmacy was running behind. We grabbed coffee and sat outside the hospital where I finally broke down, tears slipping down my cheek.

“I don’t want her to take this medication and I don’t want her to go blind,” I cried. “I just feel so stuck. She has been doing so well and is healthy and happy. I don’t want anything to change.”

Jimmy tried to console me but my mind was running in circles. We showed up at the hospital pharmacy (the only place to get propranolol due to a national shortage) after the hour-long wait and a woman waiting nearby received a phone call. Her ringtone was Trust in You by Lauren Daigle. It’s a beautiful song and I’d highly recommend giving it a listen if you get a chance.

The lyrics of that song have always been comforting to me, but were especially meaningful that overwhelming afternoon. I’d like to share a snippet:

When You don’t move the mountains
I’m needing You to move
When You don’t part the waters
I wish I could walk through
When You don’t give the answers
As I cry out to You
I will trust, I will trust
I will trust in You

Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So in all things be my life and breath
I want what You want, Lord, and nothing less

We drove home and mulled things over. We stepped into the world of hemangiomas, a world I knew nothing about just hours before. We joined a Facebook support group and found so much information and, well, support. We saw and read experiences of children who had hemangiomas of all shapes, sizes, and seriousness. We heard of laser surgery, topical treatments, and oral treatment experiences.

We set up an appointment with the pediatric ophthalmologist to check on her eyesight as the vascular plastic surgeon recommended. We wanted to see what the ophthalmologist would say before starting Dakota on oral propranolol. We wondered if her eyesight was impacted yet, if there was any way we could treat the hemangioma topically instead of orally, and wanted another opinion on the situation.

The appointment went well and the doctor let us know that while Dakota’s eye didn’t have any damage yet, he also recommended we treat the hemangioma immediately.

“I know the vascular clinic will disagree with me, but I would be okay with trying timolol gel first,” the ophthalmologist explained. “It’s also a beta blocker like propranolol, but it would have less strong side effects.”

The doctor explained that the timolol gel might not work on Dakota’s hemangioma. Even if it just stops the growth, it would be considered a success. He said the next step if the timolol didn’t work would be to go on the oral propranolol. He measured her hemangioma and asked that we send monthly pictures and come back for another eye check in a few months.

We left the appointment feeling somewhat reassured. We decided to try the least invasive route of the topical beta blocker and hope and pray for the best. We’re a couple of days into the topical treatment and have noticed a few side effects common to beta blockers, but nothing too severe thankfully.

We know that the sooner hemangiomas are treated, the better they respond. We know they can grow fast and aggressively. We pray we’re making the right decision and that we can get this issue under control and not cause any harm, disfigurement, or vision loss.

It’s a heavy thing to make medical decisions for your child when you’re learning about a medical issue in the moment, you know? When we went to her first appointment, the fear of being told Dakota could be blind in one eye was so upsetting. At the same time, I was reassured that there’s nothing wrong with her health. Praise God she is healthy and thriving. She just has a birthmark in a place that could cause trouble.

We’re not sure what the road ahead will look like. I do know I feel sensitive about it. Hemangiomas don’t hurt but the stares, whispers, and comments sometimes do. We are trying to make informed decisions and take the best care of our sweet girl.

God has been teaching me that He alone is in control, He cares, and He has a plan. I know I can trust Him because He is good. Always.

We don’t have any guarantee that the topical timolol treatment will work, but we are praying for the best and least invasive route. And if not, we’ll cross that bridge when we get there. I’ll be sure to keep this space updated. In the off chance that you have any info or experience with hemangiomas, I would love to hear about it!

Thanks for reading and caring about our Dakota 🫶🍓