Tell Your Story
Share Your Story and Raise Awareness
How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at email@example.com
Beauty and the Hemangioma – By Tracey Mueller (Kelsey’s Mother)
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 6lbs.
We 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 stopped.
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 tissue.
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.
Once 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.
VBF has networked over 35,000 children and adults into treatment
Tyler Salvador and his twin sister, Shaine.