We’ve been on our Hemangioma journey for quite some time now. I’ve learned a lot about vascular birthmarks. I’ve also learned a lot about medications.
We made the decision to treat Isabella’s Hemangioma (the large red tumor on her scalp) because it was ulcerating and causing harm to her.
That being said, you can read more about that decision and meeting with a top Pediatric Dermatologist here.
Isabella has been taking propranolol for almost 3 months now. This is a blood pressure medication that helps to treat Hemangiomas, which are full of blood vessels. We are very happy with the progress and anticipate the birthmark fading more and disappearing by the age of two.
Above: The Hemangioma before treatment. She is 4 months here and it was beginning to have skin breakdown (ulceration). You can see the breakdown where it’s dark. It was also very red and puffy. The space under the birthmark where the skin was, was elevated.
Above: The Hemangioma is healed almost completely from ulceration. The coloration is lighter and it has a lot of hair growing out of it. She’s about 7 months.
Here is the side-by-side. The top is when it was at its worst and the bottom is how it looks today after treatment. We gave/give her propranolol and also used a topical antibiotic to prevent infection.
Before treatment, above.
What it looks like now.
I’m so thankful I made the right decision and listened to my mother’s instinct. We were told by a nurse practitioner that the darkening spots were nothing to worry about and that she had seen hundreds of birthmarks like it before. I wanted to make sure, so I sent images of the spots to our Pediatric Dermatologist. He immediately got back to us and put her on an antibiotic and had us come in for an urgent appointment to begin treatment. He explained that it was, indeed, ulcerating and that it was very dangerous.
If your child has a Hemangioma, please seek out medical advice. It’s best to reach out to a Pediatric Dermatologist who has experience with vascular birthmarks. In many cases these will not need treatment and will fade on their own. (I personally know two friends with preemies who have them). In other cases, like Bellas, there could be skin breakdown and cosmetic implications (like a bald spot). If a baby has 5 or more, it’s common practice to do an ultrasound to rule out internal ones as well. Isabella went through this and doesn’t have any internally.
Lastly, thanks for your prayers and here is how God’s answered them since my first post on Bella’s birthmark.
Prayer requests and how God’s answered:
1.) This birthmark doesn’t ulcerate any further and that with treatment we can avoid pain and discomfort.
The birthmark didn’t ulcerate any further. It began to dry up and actually scabbed over. Bella hasn’t felt any pain in 2 months.
2.) Bella tolerates the medication.
Bella has tolerated the medication fine! Her hands and feet are sometimes cold because of the blood pressure medication, but no other symptoms are noted. Sometimes she’ll vomit a dose, but she vomits all the time, so we don’t see any correlation.
3.) That we would be able to handle the magnitude of treating such a little one with such a serious prescription. That we would be extra careful with doses and track it well.
The medication was/is super scary to use, but it’s become habit. We double check the dosing and make sure it’s given with her feed. We use syringes and give it to her through her Gtube. At first we tracked it with an app. Now, we know exactly when she gets it and have it written on a schedule board in our kitchen with her medications. We also have the dose written on the board. I keep a screenshot of her medications/doses on my phone as well.
4.) Also, pray against any internal hemangiomas. We have no reason to believe she has any, but it is a possibility.
We did an ultrasound and there were NO internal hemangiomas! There was a strange spot on her liver which we have to go back for another scan in a month or so, but other than that, no issues. The radiologist thinks it was just a shadow and after a full blood work work up, our GI specialist agreed it’s nothing to worry too much about.
Have more questions about Bella’s Hemangioma? Feel free to reach out. Here’s a quick resource as well.