Edie was born in Los Angeles in 2008. The doctor that delivered her looked at the birthmark on her leg and stated that the baby is healthy and has a port wine stain or angels kiss and left it at that. When the pediatrician came to examine her, he said she was healthy but that I should, in time, go to a pediatric dermatologist to have the birthmark looked at, as he had not had a patient previously with such an extensive birthmark.
I remember the waiting room of the dermatologist’s office because we were there for hours. Once seen, we were told to begin laser surgery right away in perpetuity for purely cosmetic reasons. His approach was to use laser aggressively to lighten the birthmark. We went to several other pediatric dermatologists for several opinions with contradictory advice and finally we were directed to the Childrens Hospital in our area with a Vascular Anomaly clinic. At about 10 months old, they relayed at the hospital that she may have a tethered cord since the birthmark went past her midline and they did an MRI to look into that. We were worried every day that she may not sit up. It turns out, she never needed that test.
People stare. On the playground or the market we have been asked if she was burned or abused. My job is to protect her from judgement and cruelty. Luckily she is powerful, self possessed and confident which serves as a boundary for kids’ cruel commentary. Her teachers at her new school told the children in her class to ask Edie a question once and never ask again. Edie was happy with that.
In hindsight, the stress, the anxiety, the misinformation, and contradictory information was distressing as a mother, to say the least. It was only when I found the Vascular Birthmark Foundation that we were given a proper diagnosis. At the first Vascular Birthmark Foundation conference, when Edie was 2, at her first clinical appointment, every specialist, nationally and internationally, examined her and for the first time, unanimously agreed that her birthmark is a marker of KT Syndrome. At the age of 2, we finally had a diagnosis and a team of doctors to monitor her. Dr. Gregory Levitin set up a Vascular Birthmark Center in LA, and Edie is excited to see him on a regular basis to check on her “beautiful birthmark.”
I remember going to China Town in downtown Los Angeles when Edie was 1 year old. The woman in line in front of me looked at Edie’s birthmark and showed me her leg. It was incredible. It was like looking at Edie’s leg if she was in her twenties.
The woman never knew about vascular birthmarks and never understood that her health problems were linked to her port wine stain. Even now adults are receiving proper diagnosis, albeit later in life, since the field, research and breakthroughs are quite new.
VBF is doing critical work to correct the myths and misunderstandings about vascular birthmarks.
I am pleased that now other families in our community are being directed toward VBF as pediatricians are now being educated how to diagnose their patients properly. Now we struggle with insurance companies as we need Edie to undergo ongoing laser surgeries for health reasons. VBF helps us with that aggravating process as well. There are so many misconceptions about vascular birthmarks and the accompanying conditions and the pioneering work of VBF is transforming the field in the context of the US and abroad – teaching doctors how to treat patients with vascular birthmarks and changing their lives.
Edie is writing a book entitled “My Beautiful Birthmark” and the proceeds will be donated to VBF.
I am proud to serve on the board of directors of VBF and to be an advocate for my daughter and for the larger community of those searching for diagnosis for their children.
Lauri Firstenberg, Los Angeles