Story by Claire's mom, Amy
Hello everyone! I’m Claire’s mom, Amy. I had a regular pregnancy, Claire was a full term baby. When she was born, it took a bit for them to get her breathing. Her skin was redish and where her hemangioma was it was all white. She has a sternal pit and a small growth on her chest. Other than that she seemed like a healthy baby..
We went to her 1 week check up and by then the hemangioma on her face/chest had turned bright red. The Doctor was unsure of what it was so she sent us to see Dermatology. So about a week later we saw her and she was thinking it was a port wine stain. She was unsure so she referred us to the Children's Hospital. Claire was 4 weeks old when we had our appointment. We met with a TEAM of Doctors. They examined her and heard Stridor. We had no clue that that noise was not good.. They directly admitted her, did a bronchoscopy and found she has PHACE syndrome. They started her right away on Propranolol.
Many tests later we have her final diagnosis, she has left sided beard distribution hemangioma that is also subglottic and also in her left ear..Heart murmur and sternal pit She has had multiple laser treatments, scopes and numerous other tests yearly, she had her tonsils and adenoids removed also. At 4 years of age we weaned her off the Propranolol and the hemangioma started growing again.. So they did steroid shots right into her cheek in a few areas. This has helped quite a bit.
She has had numerous physical and learning delays. She turned 6 years old today! March 8th! She has just graduated out of PT and OT. She continues with Speech. She now has a hearing aid for her left ear which is the one with the hemangioma which is really helping! We are so proud of how brave and fearless #phacesyndromewarrior is!!!
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