One Family's Experience with Hemangiomas
By Christine Khelfa, OTR/L, CHT, Triplet Mom
Originally printed in August 2004

My triplets were born on August 30th, 2002.  I had a scheduled c-section at 35 
weeks, 5 days.  It was actually a very pleasant and miraculous experience.  
We were very fortunate that my daughter and two sons were born small, but 
exceedingly healthy.  They came out crying and spent the first hour or so 
of their lives with my husband, my mom and myself before being taken to the 
NICU for a week.

On the fifth day of his life, my son, Ali, developed what looked a red 
mark on his forehead.  It was flat and very small and I thought he may 
have bumped it in the isolette or possibly an IV was inserted there (my son, 
Zak, had this type of IV).  I noticed it before the nurses and they couldn't 
explain it.  Each day it got a little redder and I started calling him my 
Little Gorbachev.  It really was not a cause for concern, especially in the 
NICU.  A few weeks later, it was a little bigger and redder.  Ali also 
developed a few, very small, red areas around his neck.  Our pediatrician 
told us these were stork bites.  As these are purely cosmetic, it never 
bothered me until it began to raise off his skin.  Thanks to programs on 
the Discovery Health channel, I had a feeling it was a strawberry hemangioma 
and knew what this indicated.  My doctor then agreed and told me it would 
eventually go away on its own and it was nothing to worry about unless it 
opened up, was near his mouth, eye or nose, or if he had more than two of 
them (the other two little, red spots never elevated and were, in fact, 
stork bites).  Apparently, if there are more than two external hemangiomas, 
there is a chance there are internal ones that can affect organ function.  
All this was fine with me because, at the time, I was more concerned about 
their feeding and growing and was also so sleep deprived, I couldn't dwell 
on it.

The hemangioma on Ali's forehead continued to grow as he grew.  It was about 
the size of a silver dollar and very noticeable.  People would often ask 
about it.  It scared my girlfriend's squeamish 5-year old so much, we had 
to put a hat on Ali before she would come in the same room (a bit extreme, 
I must say).  When he was 3-months old, it looked like it would pop if it 
was touched and had several family members quite concerned.  My mom would 
say things like, "What if one of the other babies accidentally hit it?"  
My brother said, "Is that thing gonna go away," and, to this day, one of 
the first things my grandmother asks when she sees the children is, 
"Is 'that birthmark' still there?"  All this never really bothered me 
as much as I think the birthmark bothered them.  I was, and still am, 
grateful for an otherwise healthy child.

When Ali was 4-months old, the hemangioma opened up, or ulcerated.  
I became concerned about infection.  At this point, we were referred 
to a specialist at Children's Hospital.  Ali was given a steroid injection 
right into his forehead.  For me, that was the hardest part of the entire 
ordeal, but it did seem to calm the hemangioma down and it closed back up.  
We were told that they would not surgically remove it because it was 
otherwise benign and it would eventually go away.  The steroid would slow 
the growth down, but not remove it.  We returned in another month or so 
for another steroid shot which really seemed to stop the growth altogether.  
At our last visit with the specialist, we were told everything looked good 
and to follow up in a few years as Ali might need a minor surgical 
procedure to remove any excess skin where the hemangioma once was and 
to correct any defects in his hairline, which is where it borders.  
Surgery on his hairline at the age of 5, not 45.  How funny!

At this point, Ali is almost two.  The hemangioma has significantly 
flattened out and lightened in color.  His hair also covers it.  
I forget it's there most of the time.  It amazes me when I look back 
at pictures of him from last year because the hemangioma really was 
pretty bad.  I think I always just kept things in perspective and knew 
that it would improve with time.  It was out of my control and letting 
go made it a lot easier to deal with.  I find that keeping the attitude 
of changing what I can and letting go of what I can't helps me get 
through most challenges I face in raising four small children.