New mother Jessie Langley said it isn’t her 9-month-old daughter’s toothless smile, her giggle or even her vivacious personality some people notice first. A quarter-sized raised red mass on Lennox Langley’s head oftentimes is what catches people’s attention.
“I’ve got this new baby, and I want to show her off, but (it is something that I think about),” Jessie Langley said. “If I have a bow or a headband, I’ll put that on her, not because I’m ashamed of the hemangioma, but I want people to appreciate all the other cool things about her, not just her birthmark.”
Doctors are unsure what causes the buildup of blood vessels in one spot. Hemangiomas vary in size and placement. Lennox Langley’s is in the middle of her head while other babies – mostly white females – have them around their nose, eyes, lips or neck.
“She had a little red dot that started appearing at about two weeks old, but we thought it had to do with the heart rate monitor they put on her head,” Jessie Langley recalled. “At that point, it was about the size of the barrel of a pen – just a flat red dot – but it started raising when she was about two months old.”
She said she talked to her pediatrician about the growth, but he said it’d go away in a few months.
“At about four months, we believed what we’d been told, but it was still growing,” she said. “He told us it would go away and was not a big deal, but I started looking into it on my own because I felt like I needed to know more.
He kept saying it was harmless and would go away and we believed him, but when you have something growing on your baby, especially on her soft spot, it is really scary.”
Through her research, she found similar stories of parents encouraged to ignore growths by their pediatricians, who eventually stumbled on the Vascular Birthmarks Foundation’s website.
Dr. Linda Rozell Shannon, who started the foundation, told Jessie Langley and her husband, Alex, that their daughter’s hemangioma was about a 2.5 on a 10-point scale, with 10 being the most severe case. Shannon said it likely would flatten by the time she was 3 or 4 and would lose redness by age 10.
The Langleys have opted not to pursue medical intervention, especially since insurance largely considers birthmark procedures cosmetic.
Jessie Langley said strangers have asked in a less-than-polite way about the mark – a common problem for parents of children with vascular birthmarks.
“I don’t have a problem with people asking about it, but instead of starting there, why don’t they start with how old she is or how cute or happy she is,” Jessie Langley said. “We call it her unicorn knot, so should we keep the unicorn in the room or talk about it?”
She recently ordered Buddy Booby’s Birthmark, a children’s book about a red-footed bird born with a birthmark who is discriminated against by other animals based on the mark. She said she hopes to share it with others to bring sensitivity to the issue and lessen bullying about it.
“I found out how common this is, but I never see anyone with them or books with kids who have birthmarks,” she said. “Books and media are representative of different cultures, but not this. I just hope people learn more about vascular birthmarks and reduce some of -the fear associated with them.”
– Organization Works to Increase Awareness & Support of Serious and Misunderstood Anomaly –
New York — October 17, 2008 — The Vascular Birthmarks Foundation (VBF) will be hosting its “Mark of Beauty” Gala and 2008 Vascular Birthmarks Conference on November 14-15, 2008, in Manhattan.
VBF is an organization dedicated to helping children and families affected by birthmarks, tumors, and syndromes receive proper diagnosis and treatment. Dr. Linda Rozell-Shannon founded VBF after her daughter was born with a hemangioma on her lower lip and she was unable to find information on treatment options.
According to Dr. Rozell-Shannon, vascular birthmarks are a largely unreported medical phenomenon that affects one in ten children born annually; with approximately 40,000 being so significant that they require the opinion of a specialist. Since insurance companies frequently deny treatment and because there are so few treatment centers or specialists, many children are left with a severe deformity, breathing difficulties, eating issues, blindness and, in some cases, death.
“During initial diagnosis, 90-95 percent of doctors will say that nothing can be done,” says Dr. Rozell-Shannon. (Shannon earned her PhD in order to help families affected by these lesions.) “There is an urgent need to raise awareness in parents, as well as doctors, that there are critical treatment options available.”
Concerned parents will have an opportunity to have their children examined and diagnosed at the 2008 Vascular Birthmarks Conference on November 15, beginning at 8:30 a.m. This program, which will take place in conjunction with the Vascular Birthmark Institute at Roosevelt, at Beth Israel’s Phillips Ambulatory Care Center branch (10 Union Square East in Manhattan), will also include lectures by the top specialists in the country on the latest information in the diagnosis and treatment of these lesions. (Reservations are required.)
The Mark of Beauty Gala will be held on Friday, November 14 from 7:00 p.m. to 10:00 p.m. at the Hudson Theatre in the Millennium Broadway Hotel New York, 145 West 44th Street in Manhattan. The event will feature a musical performance by stars of “Phantom of the Opera”, hors d’oeuvres and open bar, and a silent auction of celebrity items.
The exciting auction items include guitars signed by Miley Cyrus and the Jonas Brothers; a bat signed by Reggie Jackson; a 2007 New York Giants signed helmet; a Derek Jeter signed and framed New York Yankees jersey; a Sandy Koufax signed and framed L.A. Dodgers jersey; a Magic Johnson signed/encased basketball; a Joe Montana signed/encased 49ers helmet; a David Wright autographed bat; Yankees, Mets, Giants, Jets, Patriots and Red Sox memorabilia; and other many other collectibles.
People can also bid on a NASCAR driving experience; a Fighter Pilot for a Day experience; a trip for 4 to the 2009 Masters; a Sonoma Wine Extravaganza; and VIP tickets to many events.
For information on the clinic, gala, and auction – and to make reservations and obtain tickets – please visit www.birthmark.org
VBF is also seeking corporate sponsors as well as donations of silent auction and gift bag items. (All donations are tax deductible.) Please contact Basia Joyce if you would like to contribute to this organization—which has had such a profoundly positive impact on more than 35,000 families worldwide.
About Vascular Birthmarks Foundation (VBF):
Vascular Birthmarks Foundation (VBF) is the leading not for profit in the world for families afflicted with vascular birthmarks, tumors or syndromes. It is an international organization that networks families to the appropriate medical professionals for evaluation and/or treatment and provides informational resources. VBF also sponsors physician education, research, and programs that promote acceptance for living with a birthmark. Programs include Babies with Birthmarks, Orphans with Birthmarks, and VBF Day of Awareness.
Binghamton, NY – December 4, 2006 – FACES Publications, LLC announced today that Vascular Birthmarks Foundation founder Linda Rozell Shannon will make an appearance at its annual Book Release Party on Thursday December 7, 2006 at 7:00 p.m. at the Anthony Brunelli Fine Arts Gallery, 186 State Street in Binghamton.
Rozell Shannon is the President of the Vascular Birthmarks Foundation and is the world’s leading lay expert in the field of Vascular Birthmarks. Her remarkable dedication and outreach have made treatment possible for thousands of children all over the world who suffer from various birthmark anomalies. Rozell Shannon wrote the forward in the 2007 edition of FACES of the Southern Tier which will be showcased at the release party.
“We are extremely honored to be hosting Linda Rozell Shannon in Binghamton this week. She has made a phenomenal impact on thousands of children and families all over the world with her tireless efforts in her assistance with finding treatment for vascular birthmarks”, said Roger L. Brooks, editor-in-chief of FACES Publications. “I can attest first hand to the tremendous amount of information my wife and I received from the VBF website when we were trying to find treatment for our daughter in 2002.”
In 1995, with the help of Dr. Martin Mihm, Rozell Shannon started the Vascular Birthmarks Foundation. In 1996, she began her work on a book entitled, “Birthmarks, A Guide to Hemangiomas and Vascular Malformations.” Published in 1997, it is still the only publication available on the subject that is written for parents.
For more information on vascular birthmarks, please visit the website at www.birthmarks.org. If you would like to interview Linda Rozell Shannon please contact Roger L. Brooks to make arrangements.
Roger L. Brooks
FACES Publications, LLC
49 Court Street, 2nd FL
Binghamton, NY 13901
Phone: 607.723.0324/ 607.343.7864