My Hemangioma Birthmark

I have a strawberry hemangioma birthmark covering 3/4 of the left side of my face.  It measure 5x20 cm according to a page in my medical record.  As the first child born to my parents, neither knew what to to or expect when my birthmark showed a few weeks after I was bor.  Doctors told them to wait until I was older to have any type of treatment.  Until I did have treatment, I was not able to see out of my left eye due to the swelling of the hemangioma.  While the swelling did not significantly extend anywhere else, the discoloration was seen on my left ear, inside my left ear canal, on my gums, and down my throat in addition to visibly on my face.  During the course of other medical exams, it would also found that I was completely deaf in my left ear due to the nerve being damaged.  It is not known if this is directly linked to the hemangioma.  I have also been told by optometrists and ophthalmologists that I have some hemangioma discoloring in the back of my left eye.

When I was 8 months old, steroid and dry eye treatments were started and continued until just after I was a year old.  At that time I was able to see out of my left eye.  But, what the doctors had feared had occurred; the left eye was weak from not being used for such a long period of time.  I also had much more poor vision in the left eye, but it was felt that this did not need to be corrected with glasses since my right eye was 20/20.   I had to wear patches on my right eye during my childhood to strengthen the left eye muscles.  In 1992, though, I did get glasses as my vision in my right eye was decreasing.  At that time, my vision in my right eye was 20/40 and my left eye 20/200.

When I was 4 years old, I was referred to the Shriners Hospital.  I went to the Shriners Hospital in Chicago, IL once a year from then until I was 17 years old.  However, I was only monitored.  When I was 15, my mother and I were told about the new laser treatment that could be done for a hemangioma.  I had been evaluated by a doctor of dermatology at the University of Michigan per referral from one of my other physicians.  He recommended the procedure, but my family’s insurance would not cover it and my family could not afford the cost of it.  The option was then brought to the attend of the Shriners when I next visited then at age 17.  They told us that the Shriners Hospital in Cleveland, OH, performed the procedure, but only able to go there on my own (without transportation from the Shriners) and I would have to do it before I turned 18.

Over the years, my hemangioma has decreased in both swelling and color.  I have a scar in the middle of my left cheek caused by a cause of eczema when I was a little under a year old.  That combined with the remained red lines makes people think I am a burn victim.  To my knowledge, I have not had any serious complications from the hemangioma.  My left eyelid if abnormally shaped with excess skin that causes my eyelashes to grow inward towards the eye.  I have had procedures to have the eyelashes removed and reduced.  I have been warned that if I am ever seriously cut on any area of the hemangioma, I have an increased risk of excessive bleeding.  I have other medical diagnoses, but none related to the hemangioma.

In November 2012, I had eyelid surgery to fix my left eyelid. After years of dealing with eyelashes growing inwards towards my eye, in addition to this irritation my eyelid was drooping and turning under itself. The surgery that was done was a mucus graft to my eyelid. The doctor cut off the eyelash line and lower portion of the drooping eyelid and grafted a piece of the inside of my lower lip to the eyelid.

My goal for having this page and by telling my story is to provide parents comfort that things will work out.  I have lived a full life: graduating from high school near the top of my class, graduating from college with my Bachelor’s degree, later getting my Master’s degree, and working as an Occupational Therapist for Special Education in a school system.  I also have a family that loves me, three best friends that I’ve known since high school, other close friends, two dogs who think the world of me, one wonderful husband who loves me, and 2 beautiful sons who love me unconditionally.

I have triumphed over the odds put before me and lived through the social stigma of having a “disfiguring” birthmark. JSW

Copyright 2014