Dr. Linda Rozell-Shannon, PhD President and Founder
This is the story for my little girl Sophia, she’s just turned one year old.
Since before she was born, she showed us how much of a fighter she is! Though a very complicated pregnancy then coming 4 weeks early, she surprises us everyday.
Sophia hasn’t had the easiest start to life… at 6 hours old she was given a lumbar puncture as Doctors thought she had meningitis, she was also very jaundice.
At three days old we noticed a mark, were told she had a large port wine stain birthmark over her right eye, forehead and scalp. Later on we found out it’s was a infantile hemangioma or a strawberry birthmark. We had never come across anything like this before and the doctors around us weren’t very helpful.
Thanks to a group on Facebook, the members directed me to a lovely lady in Great Ormond Street, she told me exactly what we needed to do and where we needed to go to get Sophia on the right track with medication to help her hemangioma. Day by day Sophia’s birthmark grew, going from pink to blood red, until it had swollen her eye shut. She experienced numerous bleeds, was all so scary, especially when waking up to find your baby covered in blood! Before they could start any sort of treatment, Sophia had to undergo an mri, echocardiogram and ecg all at less than a month old!
Now thanks to the medication propranolol, her birthmark has changed dramatically, she’s able to open her eye completely!
She is one happy little lady, who when she grows up will be able to accomplish anything!
She’s an amazing little fighter who will never understand how unbelievably proud I am to be her mum! She’s our beautiful little fighter.
Hopefully stories like this one will help raise some awareness for hemangiomas and other types of birthmarks. The majority of responses we’ve had have been good, but we have encountered one or two not so nice remarks and a few stares.
As Sophia gets older, we will teach her to love what’s left of her birthmark, if anything, and how to respond to negative comments respectfully and politely.
Thank you for reading!
Thank you to Amanda, Sophia’s Mom, for sharing their journey with us!