Infantile Hemangioma - Our New Normal

When Rowen was born, we noticed a mark on the bridge of her nose. One pediatrician said it was probably just from the delivery, it would bruise and go away. Five days after she was born, a nurse practitioner said [with complete confidence] that it was a stork bite, and that it would fade within a few months. Two weeks after that visit we saw her primary doctor, whom we love, and he recommended waiting a little longer to diagnose the mark as anything. Although we had seen growth, he wasn't concerned and asked that we watch it a little longer to be sure of what it was.

In the hospital.

It continued to grow, darken in color, and eventually started to grow outward as well. I did a ton of research, contacted doctors I know personally seeking their opinions and began scheduling consultations. I even joined a Facebook Support Group to learn more and hear other stories. Not because the mark bothered me, but because I was curious. I wanted an answer, what was this sweet little mark? Would it get bigger? Could it grow into a tumor? Could it be cancerous? When it comes to your child's health, it's hard not to worry. It didn't bother me, it's part of Ro's appearance, and to me, she is absolutely perfect. My husband worried about her growing up and getting made fun of. I tried to reassure him that it would be okay, but I too started to worry about humanity.


One of my doctors recommended Riley, he told us to be our daughter's biggest advocate. To see the best doctors. That we should get it "taken care of" now before later. See a plastic surgeon, get it lasered. I think my jaw was on the ground! Children live with these birthmarks, you don't always have to treat them. Both in public and on social media it seemed like everybody and their Mom had an opinion. "Aw did she scratch herself" "What happened to her nose?" "Did her big sister punch her?" I laughed through it all, astonished that so many people had something to say, but then again, I admitted to my own curiosity. I couldn't blame them, I simply thanked God for giving me a big smile and a heart full of grace [most days].

Stork bite, strawberry, birthmark, angel kiss, red port wine stain - hemangioma. All of my research pointed to this. I knew this was an infantile hemangioma, and at her two month check up her pediatrician confirmed it. Very calmly he told me that he would refer us to a specialist, and that he was worried about the rate of growth, that it could eventually obstruct her vision and he didn't want her to loose any of her vision. He reassured me that it wasn't invasive, it wasn't growing behind her nose or eyes, and that it wasn't a tumor or cancerous. Funny how he touched on a subject that I had worried about without me even bringing it up. God's comfort pouring through our pediatrician's words. God's good like that.


We were referred to a dermatologist who referred us to a cardiologist. We will work with both doctor's monitoring her medication, the growth or if the hemangioma fades, and keeping a close watch on her heart rates & blood pressure. When I think back to the comments I heard from people, the majority of them were about how they loved her angel kiss, and how beautiful Ro is. And even as the curiosity comments still came, I didn't let them bother me, that is, until one individual said, "Rudolph for Christmas."

WHAT?????!

All of a sudden, my blood pressure was elevated and my heart was racing. Why would someone call her a name like that? I quickly deleted the comment, embarrassed for the grown woman as I tried to figure out her angle, her intentions, surely she wasn't trying to be rude, so why did it hurt my feelings? Because I was afraid those words would one day hurt my little girl. And as her Mom, all I want to do is protect her, not just from mean words, but from the whole world.

Name calling is never nice. No matter the age, it's just not nice. And being nice matters, being kind to others, having their feelings at heart, IT MATTERS! Kindness matters, people. Loving one another matters, through all of our differences.

Yesterday, Rowen started on propranolol, an oral medication she will take 3x a day for the next 6 months. That didn't sound too bad until we were told we have to check her heart rate before every dosage, and then when I thought about the dosage, that's every 8 hours. Every 8 hours, around the clock, for the next 6 months. I literally will set the timer on my phone to go off every 8 hours, without an end time. So I started thinking about waking her up to distribute meds, or if we are at the store shopping and she needs meds. Or a friends house. I now will be carrying a stethoscope in my diaper bag, and although it might deem inconvenient, or a hassle, it's our new normal. And I'm okay with that. I know there are so many children in the world that don't have access to modern medicine or great doctors, and I know that there are children on way more medication than my sissy Ro, or children who won't get better. So I will continue to count my blessings, and not take our health for granted.

I'm grateful for a pretty healthy baby girl, and I will continue to pray protection over her little body while she's on medication. And while I'm praying I'll be thanking, thanking God for blessing me beyond measure.

Snuggles after Day 1 of meds.

14 comments

  1. My little girl has one on her back and two on her head. I think they are apart of her and its something that makes her even that more unique and special. I think your daughter is beyond beautiful with or without her angel kisses and blessed to have such a caring mother. Good luck with your journey !😙

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  2. My little girl has one on her back and two on her head. I think they are apart of her and its something that makes her even that more unique and special. I think your daughter is beyond beautiful with or without her angel kisses and blessed to have such a caring mother. Good luck with your journey !😙

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  3. Praise the Lord for medicine and that it is not cancerous! Covering you and your family in prayer on this new journey. She is beautiful!

    http://beyondblessedblog.com/

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    1. Thank you for the prayers - our little girl is covered in God's goodness and blessings!

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  4. I have never heard of this before and love that you are sharing your story and bringing awareness. Your little girl is absolutely gorgeous! xo

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  5. My daughter has one on her head. It didn't show until she was about 2 weeks old we were concerned it was a bug bite. Made a doctor's appointment I hopes of getting answers, her pediatrician sent us to a dermatologist. At her first appointment they were concerned with how large it was and how fast it was growing they talked to us about Lazer treatments, but first they wanted to try an injection and topical ointments. Lazer treatment scared me I didn't want to inflict pain on her. I had many fears as well, I didn't want her to have a bald spot. we started topical treatments, and within a few short months they started working. She is now a little over a year old and it is significantly smaller and lighter in color. I hope your little one responds well to treatment and wish you and your beautiful family the best of luck. Xoxo

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    1. Hi Brittany! Was your little girl on timolol? I wish we could have started on something topical rather than oral, but we wanted to do what the doctors thought best. Laser treatments scared me as well and our doctors didn't recommend them, hoping we see good results! xo

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  6. I can't believe people's comments sometimes. Poor Mamma. My daughter had 2 of these, but they were on her back so there was no concern. She's 4 now and they've almost faded away completely. Your daughter is gorgeous and don't let others tell you otherwise xo

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  7. I have one in my leg I never touched. My mom used to tell that that was a kiss from an angel! ☺️

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    1. I believe it!! Definitely an angel kiss xoxo

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  8. She is beautiful. And how lucky she is to have you as her momma!

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  9. This is beautiful. Such a good mama.

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  10. aw mama! my daughter had a few "stork bites" at birth and they seemed to have faded away. you're amazing and so is your baby girl!

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