Beauty and the Hemangioma – By Tracey Mueller (Kelsey’s
Kelsey Mueller is a beautiful 17 year old who has had many obstacles
to overcome in her life. She was born weighing 7lbs 15oz and had a very
large hemangioma which was present at birth. Initially, her birthmark
appeared to be a port wine stain, very deep purple in color and covered
her left arm completely from fingertips to chest, neck and shoulder.
Kelsey was not eating much after birth and went home 2 days later weighing
would later learn the cause of the weight loss, initially attributed
to her not liking formula. As we experimented with different brands
per our pediatrician it became clear there was more to the story. During
the first 8 days of her life she rarely had the energy to drink more
than one ounce of formula before falling asleep and was sleeping most
of the day. On the third visit to the doctor we discovered something
was seriously wrong with our daughter. Her weakened state and pale color
lead the doctor to do lab work. Her blood count came back extremely
low, we were informed that an adult would not have survived with a similar
blood count level.
Kelsey was sent immediately to Medical College of Virginia with suspicion
of having Leukemia or some other blood disease. While in the hospital
they continued test her with lab work, spinal tap, MRI, CT scans and
finally the upper and lower GI tests. During the GI tests they discovered
she had an internal hemangioma in her stomach. The hemangioma was causing
internal bleeding. It was also during this time we discovered her external
birthmark was a cavernous hemangioma. Kelsey remained in the hospital
for nearly two weeks while doctors observed and tested her. During this
time she received many transfusions. There was a growing concern among
Kelsey’s doctors that due to the location and size of her external
hemangioma complications may arise if it began to grow inward around
her heart and windpipe.
At only a few weeks old Kelsey was stable but the external birthmark
continued to grow at a rapid rate. Daily trips were made to the doctors
for her blood count and the continued bleeding of her internal birthmark
which required transfusions every 3-4 weeks for the first 18 months
of her life.
Around 8 weeks her external hemangioma began to ulcerate severely leaving
open wounds over large areas of her chest and arm. With a second opinion
from another plastic surgeon (still Kelsey’s surgeon after 16
years) the laser treatments were stopped. We strongly believe the treatments
may have progressed or started the ulcerating based on the fragile nature
of cavernous hemangiomas due to the thin skin and veins being close
to the surface. A pressure garment became one of the better treatment
options we discovered. However, when Kelsey was a little older and stronger
we did have success with laser treatments in some of the less dense
areas where the skin was less fragile.
During this period of ulcerations and internal bleeding she came so
close to death several times. We dealt with many traumatic episodes
from veins working their way out of her arm and bleeding freely while
she bled internally to the ulcerations of her birthmark causing her
arm to grow together at her armpit and elbow from the ulcerated areas
touching each other.
We continued to travel around Virginia and out of state to search for
help for our daughter to control the bleeding, ulcerations and the growth
of the birthmark.
Because of Kelsey fighting all of these things at once, her wounds
were consuming all of the calories she consumed. She weighed just twelve
pounds at one year old. When she was about 18 months we visited John
Hopkins University and met with a doctor there. The doctor recommended
a very simple solution, adding corn oil in her formula. The corn oil
gave the extra calories she needed to begin healing internally and paired
with anti acids within a short period of time the internal bleeding
At the age of two Kelsey underwent skin grafting to close some of the
ulcerated areas and release the contractures of her elbow and armpit
area hoping to get full range of motion in her arm again. Kelsey, now
17, continues to have Z-plasties surgeries and ligament extensions every
few years to straighten her arm still hoping to achieve full range of
motion. Kelsey’s next surgery will be this year and it will involve
shaving of the bone in her elbow to free up the restrictions from scar
Some may think she has gone through so much physically but it is just
as much mentally that she has had to endure in life from peers and adults.
Words or assumptions hurt just as much as the physical pain. People
see her and think she was burned because of the skin grafting and actually
ask her how she was burned, or they just stare at her. This is one of
the many obstacles she has had to overcome.
a shy girl, when she was about eight years old we decided to enter her
into her first American Coed Pageant, after she watched her sister compete
for years for the same system. We were skeptical at first because of
the situation but then found this was the best thing we could have ever
done for her. She placed in the court at her very first pageant. This
pageant gave her the courage and confidence to overcome so much while
teaching her poise and self esteem and from this she realized she could
do whatever she put her mind to. To this day Kelsey loves to be on stage,
not only competing in pageants, but also performing in school plays
as well as choreographing dance numbers for pageants. Kelsey also plays
basketball, softball and is involved in many clubs at her school.
Kelsey plans to compete in a pageant this year and her platform will
be “self esteem and Vascular Birthmark awareness.” She hopes
to promote the awareness of this condition and to help other children
and families dealing with this rare but serious condition. The entire
family will be helping to raise awareness for VBF during their International
Day of Awareness campaign, which is May 15, 2008.
For someone to have gone through so much in so little time Kelsey continues
to be an active and positive girl always looking for ways get involved
in what ever she can to help others. As you can see from looking at
her pictures, she is as beautiful on the outside as she is on the inside.