by Thomas K. McInerny, M.D., FAAP,
Bernard A. Cohen, M.D., FAAD, FAPD, FAAP, and
Linda Rozell-Shannon, Ph.D., M.S.
Since its inception in 1994, the Vascular Birthmarks Foundation (VBF) has focused on combating the old benign neglect philosophy of “leave it
alone, it will go away” for treating, or not treating,
an infant diagnosed with a vascular birthmark. The
foundation, along with the Academy and pediatric
dermatologists, is taking a more proactive role in
early treatment education.
Annually, one in 10 infants is born with a vascular birthmark. These birthmarks include infantile
hemangiomas, port wine stains, venous malformations, lymphatic malformations, arteriovenous
malformations and associated syndromes such as
PHACES, Klippel-Trenaunay and Sturge-Weber.
Based on the average of 4 million live births a
year in the U.S., 400,000 babies will be born with
a vascular birthmark. Ninety percent of these birthmarks will go away, requiring no intervention. The
remaining 10%, or 40,000 vascular birthmarks, will
be so significant that they will necessitate a referral
to a vascular birthmarks expert for evaluation.
These 10% are the primary focus of the VBF, the
Academy and pediatric dermatologists. These are the
hemangiomas that can distort tissue, obstruct vision,
impair eating, ulcerate and bleed profusely. They
also include the port wine stains that can progress
and thicken with a risk of pain, irritation, bleeding
and infection as well as psychosocial scarring for the
child and the family. Left untreated, these 10% can
face a life of countless surgeries and psychotherapy
Prior to the 1980s, there were few options for
treating a vascular birthmark. Couple this with the
fact that 90% eventually resolve, it is no wonder
that the “benign neglect” philosophy has persisted.
Based on numbers alone, most would agree that if
90% resolve, treatment should not be an urgent
matter. However, for the parents of the 10% and
for the infants affected, it is an emergent and often
An unfortunate consequence of the “majority
rules” philosophy relates to insurance providers.
Since the textbooks indicate 90% of these lesions
will resolve, insurance companies frequently deny
coverage of treatment, opting to ride out the involution process. This catch- 22 causes a great deal
of frustration for primary care physicians and the
families of those seeking and needing treatment.
There is some optimism that this outdated phi-
losophy can now be challenged. The recent revision
to the AAP Textbook of Pediatric Care significantly
expanded the information regarding vascular birth-
marks and their need for treatment. However, this
new information has not yet trickled down to the
decision-making insurance providers. Nearly 75%
of the families seeking treatment will be denied on
a first submission and will need to appeal.
In 2015, VBF worked with the Academy to send
a letter to all insurance carriers strongly encouraging
coverage of treatment, http://bit.ly/2n7OFlX.
Many physicians and families use this letter to
appeal denials. Some are successful, and some are
not. Many parents give up and pay cash for treat-
ment. Surgeries can range from $4,000 to $40,000,
and laser treatments can range from $500 to $1,500
each. This poses an unnecessary financial hardship
on the families. VBF works with many to appeal
denials and to urge insurers to cover treatment.
As we mark Vascular Awareness Birthmarks Month
in May, the Vascular Birthmarks Foundation along
with the Academy and pediatric dermatologists are
calling on all primary care physicians to refer in-
fants at the 4-week well-baby check-up to a vascular
birthmarks specialist if a vascular birthmark is still
present, does not appear to be resolving and has the
potential to become disfiguring and/or problematic
so that treatment can begin early. If birthmarks are
growing quickly, it is important to send infants for
consultation even earlier.
We also are calling on every insurance company to
re-examine its policy on denying the treatment of the
10% affected by a vascular birthmark that will not
resolve and who are at risk for serious complications.
Early diagnosis and early treatment will not only
ward off psychosocial trauma to the family system
and reduce the chances of a disfiguring lesion and
pain to the infant, they also can reduce the number
of treatments that eventually will be required for the
Early treatment for the 10% is win-win. The baby
wins, the family system wins, the insurance company
wins and the treating physicians wins. Though many
would agree that 10% is a small number, it has large
consequences for affected families. Early referral
and treatment can prevent these consequences and
provide the baby and family with the best possible
outcome for a normal life.
Dr. McInerny is AAP past president (2012-’ 13). Dr.
Cohen is past chair of the AAP Section on Dermatology Executive Committee and past president of the
Society for Pediatric Dermatology. Dr. Rozell-Shannon is president/founder of the Vascular Birthmarks
• AAP information on infantile hemangiomas, http://bit.
• Vascular Birthmarks Foundation, https://birthmark.org
Vascular birthmarks in infants: importance of treating the 10%
Dr. McInerny Dr. Cohen Dr. Rozell-Shannon