My journey as a Hemangioma mother

When my daughter was six weeks old two little dots began to appear; one behind her ear and one on her thigh. We thought they were freckles until they began to get more red and grow in both width and height. When I went to both her 2 month and 4 month check up her pediatrician at the time blew me off. He explained they were Hemangioma’s but would do no harm. He continued to tell me it was no big deal even when the one behind her heard had doubled in size now almost the size of a quarter raised a bit up. “No, I’ve seen a few and they just go away no problem”. My mom gut told me other wise. Then we were on a plane about to land back in my husbands home state for vacation and my nightmare happened… It began bleeding. A lot and all over her clothes. But why? Her doctor said nothing of blood so why would it be bleeding. I called and they scheduled us a appointment with another physician assuring me it would be okay. Within seconds of the new physician taking a look, she told me how surprised she was we hadn’t been sent on to a specialist. Within a week we were sent to Lucile Packard Stanford Children’s Hospital in Palo Alto where we met with the head specialist for what we were officially diagnosed with, Hemangioma Birth Marks.

You all are probably wondering, what on earth a Hemangioma is. I was you, I had never heard the term till I did my first google search trying to figure out what on earth was on my baby. A Hemangioma is a benign tumor made up of blood vessels that can be located in various locations such as skin, bone, muscle, and internal organs. Among others, it is categorized in the Vascular Birth Marks family. Although there is no none cause as to why they appear, it is believed to deal with a certain type of protein produced in the placenta. Hemangioma’s are most common in females but can occur in males as well. Other risk factors are premature and Caucasian. They typically appear at birth or soon after growing in size until hitting a plateau then decreasing in size. Many Hemangioma’s (also known as strawberry marks) do not require treatments and after about a year, will begin to go down on their own. However, not all cases are that way. Most common reasons for need of care is rapid growth, sensitive areas(near eyes, mouth, ears, etc), bleeding or sign of infection, and multiple Hemangioma’s at various locations on the body. McKynleigh had every single red flag. So why hadn’t we been sent on after I had continued to bring it to the drs attention.

McKynleigh at 8 months visiting her specialist at Stanford Children’s Hospital

When we saw Stanford, they made it very clear that she would require not just oral medication but additional steroid shots because it had been neglected and grown so rapid. Oh the anger I had sitting in the office that day. The doctors explained our options and gave their suggestions, but also said at five months old and with how large the one behind her ear had become, there was a very high chance she would require surgery to fix what had been ignored.

With Hemangioma’s there are typically 5 “options” when looking at treatment plans and all are based off of your specific hemangioma.

  1. Topical cream. There are a few different options but applied like lotion to help. Most common when caught early on.
  2. Oral medication. Beta-Blockers such an Hemangeol is most common and typically given 6-12 months to help reduce growth and aid in healing.
  3. Steroid Injections. We did this on top of oral medication for 6 months due to the first months on oral medication making little no difference. After two injections, we began to see a noticeable reduction in size both width and height.
  4. Laser removable. Laser is becoming more and more common although normally used in more extreme cases and not all insurances cover it.
  5. Surgery. Now there are two surgeries needed at times with hemangioma’s. One is the removal of the hemangioma it’s self and one is the removal of the excess skin left after the hemangioma has gone away.

We did both oral medication and steroid injection per the specialist recommendation the first 6 months. After that we continued oral medication and have had to increase as she grew due to her Hemangioma’s growing even after treatment. Now you may think no big deal, but here’s the thing. McKynleigh has had a lot of ups and downs on her medication. Any dose change means 1-3 weeks of extreme grumpiness, tantrums, sleep problems, and sometimes an upset stomach. The older she gets the harder it is. Some days, especially after a dose change she will be upset all through out the day. I ask the doctors and they just tell me to hold on till the specialist believe it’s an okay time to wing off. It breaks my heart for my baby to not feel good and it breaks my heart there is nothing I can do to help. At our last appointment the specialist told us that they hoped they would be able to begin reducing and eventually stopping the medication all together. They also told us that due to the fact we weren’t able to catch it in time, it grew to fast and we will have to have surgery to remove the remaining skin. The thought that my little girl will have to have surgery for something that could have been helped sooner breaks me inside. Hemangioma’s are not known enough with doctors and far to overlooked. Do all Hemangioma’s need to be treated? Surely not, I’ve met a few moms whose child’s began to shrink as soon as 6-9 months. I think that many doctors think they are no big deal and don’t take the time to care as they should. Not all cases are the same but our daughters Hemangioma’s truly changed us the past year and half. Some days I have loved the sweet little strawberry mark and some days I cry because I can’t help but pray for it to all be over so my baby can feel better. I never expected to go through this as a parent or to have to see my baby cry from a medication that is supposed to help her. I’m thankful that we are nearing the end of our journey but still feel like it is so far away. Looking back now, I wish I knew what I know now. I wish I had demanded more when she was little and done more researched. One of the hardest parts of this journey is having very little awareness which is why this upcoming month, May, is dear to my heart! May is Hemangioma awareness month and I love seeing other parents who have gone through similar journeys as ours. For those parents who have a child who has or has had a Hemangioma, I challenge you to share your story!

At 12 weeks this was the size of the Hemangioma behind McKynleigh’s ear.

After a 5 months of oral medication and 3 steroid injections.

14 months after starting medication

Have you ever heard of a Hemangioma? Does your child have one? I am always wanting to meet more parents going through what we have so let me know!

Xoxo

Christian Mulkey

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