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Kristin and Molly's story

Writer's picture: hemangiomamommahemangiomamomma

Hi,

My daughter Molly developed 2 large hemangiomas the day after she was born. The red spots that we noticed on her shoulder & upper back were initially thought to be because of her traumatic birth do to shoulder dysplasia & Nuchal chord. Day two was the first time we heard the word hemangioma.


Within her first month they exploded in size and color. They were growing so fast they ruptured at 1.5 months. Then we embarked on a journey of multiple bandage changes a day and trying to keep her out of pain and without infection. She was also put on propranolol at this time yo try to shrink the blood vessels. This meant weekly trips for cardio grams and scans to make sure the medicine wasn’t damaging her heart. I’m pretty sure this more traumatic got her dad or I, and outside of a few tears during bandage changes she was the happiest baby.


The ruptures finally stopped and began to heal around 6 months. She was left with two bright red spots. Slowly the redness began to fade (by about 3 her back was no longer red), changing to fatty tissue completely around age 7.

She’s now 10 and her shoulder hemangioma has shifted down on her arm a bit as she has grown and is still raised. Her back is still very large and raised but blends color wise with her skin- except during the summer when she is tan.


We taught her from a very early age what to say when kids would point or ask her about them. We encouraged her to name it, so in a cute little 2 year old voice I would hear “It’s my hemangioma, it’s my special birth mark.” We feel fortunate, more often or not moms and kids would be concerned she was hurt, particularly when they were still very vascular and red. She only encountered a few nasty comments from kids.


We encouraged her to wear what she wanted & if it showed off her hemangiomas then that was great because there’s nothing to hide. Around age 5 she was not comfortable in tank tops, so we let her lead the way and soon the little fashionista overtook any insecurity she had. Now, as a tween she confidently rocks bathing suits and clothes that show off her special birthmarks.


This past spring she walked in both New York Fashion Week & Rhode Island Fashion Week with her shoulder hemangioma on full display.





The prognosis is good, they haven’t flattened as much as we thought they would, but the frequent dermatology appointments have dwindled to a yearly check up and as long as they don’t bother her we will just continue as we are.


Thank you for this site and sharing these stories.


- Kristin.


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If you also like to share your story, do not hesitate to write to hemangiomamomma@gmail.com.



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