Isabella’s Hemangioma Update…We’re OFF Medication!

Taking Bella to her first appointment after leaving the NICU

It’s so funny…because sometimes I forget that Isabella has a Hemangioma. At one point in time it dominated first impressions and pictures. Today, it’s a small mark that can only be seen if you’re looking for it…or if her hair is ruffled a certain way.

You see, Bella was born a micropreemie. She weighed ONE pound and SEVEN ounces. That’s it. At first, you couldn’t notice the Hemangioma at all on her scalp, but as she grew, it grew too. I’ve written a long post about Hemangiomas and what they are here, but the short and sweet answer is this:

“A hemangioma (he-man-jee-O-muh) is a bright red birthmark that shows up at birth or in the first or second week of life. It looks like a rubbery bump and is made up of extra blood vessels in the skin.” Mayo Clinic

Bella had 6 at one point. They were all almost unnoticeable except the one on her scalp which grew aggressively once she was adjusted to a newborn. We eventually made the decision to treat it because it was threatening to break open and could get infected. Personally, I was a little relieved we treated it from a cosmetic standpoint, too. I was concerned she wouldn’t have hair growth where the Hemangioma was and I was also concerned about the long-term effects of the loose skin once it went back down in size.

The other 5 weren’t a problem and they were itty bitty red dots. There were 2 on her chest, 1 near her navel and 1 behind her ear. Since she had so many, the Pediatric Dermatologist ordered an ultrasound to rule out any internal ones. It was a frustrating process because something was detected on her liver…but 6 months later it was ruled as a misread and perhaps just a shadow. Those times of waiting were very stressful.

4 months ago we began to wean her off her medication. This was exciting, but scary! We had to do it very slowly since it was a medication that affected her blood pressure. Once she was off the medication, Propranolol, we waited. Although very rare, Hemangiomas can have some regrowth. Unfortunately Bella’s did. We called and re-started the medication for 6 weeks. We weaned again. Tediously, we prayed that the Hemangioma would stay down while we weaned slowly off the medication.

In the Spring, we took pictures for Mother’s Day! We were still on medication

Today, she’s been off the medicine for over 2 months! Sometimes it looks puffier, since she still has some blood vessels outside where the Hemangioma is, but mostly it has stayed down and almost flush with her scalp.

We are so thankful for Dr. Nguyen and his team at Akron Children’s Hospital. They walked us through each step and monitored Bella very closely when we began the medication. He answered all of our questions and was available any time we needed him! He even would message me back quickly and called us on his cellphone when the Hemangioma looked very bad.

We are so thankful it has gone down and isn’t a risk to her health! A few friends have said they love it, because it’s uniquely HER! I agree!

This photo shows what her Hemangioma looks like when her hair is back. Taken 2 weeks ago at Disney World.

I wanted to write this post to encourage anyone whose baby was born with Hemangiomas. I’m not an expert, but have been through it. I’m always happy to answer any questions!

Love and Light,


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