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Little girl copes with rare vascular disease

Condition can cause pain, disfigurement

POSTED: July 14, 2013 12:30 a.m.

Abigail Haynes celebrated her first birthday May 7, the same day she met the doctor who is trying to give her a normal life.

While most children see doctors for check-ups and vaccinations, the 14-month-old girl sees them for MRIs and painful procedures to treat a rare vascular disease.

She was born with venous malformations. Caused by unusually thin vein walls, her veins tend to grow into lesions that can cause pain, disfigurement and possibly inhibit normal bodily functions such as eating or breathing.

Abigail has three malformations — on her lip, cheek and the back of her tongue — that could grow and spread to other areas.

“When she was born, she had a blue mark on her left cheek and they said it was probably just a bruise,” said Jessica Haynes, Abigail’s mother. “When it didn’t go away after a few weeks, they said it was a birthmark.”

After another mark appeared on the back of Abigail’s head, her pediatrician sent her to the Emory University Hospital. Doctors there assured Haynes they were benign blemishes called hemangiomas, which are common to infants and usually dissapear by age 10, and there was nothing to be concerned about. However, the mark later led to the discovery of her venous malformations.

“I accepted what the doctors said, but I never quite felt right about it,” the mother of two said.

In March, Haynes noticed Abigail was having trouble taking her bottle.

“She was tugging at her cheek and just kept crying like it was hurting her,” Haynes said. “I looked at it and the mark had gotten larger.”

Haynes called doctors at Emory who advised her to bring Abigail in immediately. After an MRI and seven doctors conferring for more than two weeks, Abigail was diagnosed with venous malformations, a rare vascular anomaly.

“If not taken care of, controlled and treated, they continue to grow throughout her entire life,” Haynes said. “Doing some of the research on my own, it was disturbing to see the pictures of what it could turn into.”

Doctors at Emory explained they could remove Abigail’s masses as they formed and try sclerotherapy, a process of introducing irritants to a varicose vein to shrink it. But Abigail’s masses were currently inoperable, Haynes said.

“When you hear that from some of the best doctors out there, it is very upsetting,” she said.

Through her own research and a recommendation from a family member, Haynes and her husband Travis found Dr. Milton Waner, a world authority on vascular malformations, according to the Vascular Birthmark Institute of New York.

“He told me that he could cure her, but that he didn’t know how many procedures it would require,” Haynes said.

Waner proposed he use laser treatments to collapse the malformed veins, a method that he has extenisve experience with.

After two procedures, the malformations on Abigails tongue and cheek are responding to treatment. She has a more invasive procedure scheduled for Aug. 15, in which doctors will surgically remove the unresponsive malformation located on her lip.

While the Hayneses watch their youngest daughter undergo medical procedures, its effectiveness is not the only worry on their mind. The couple is also burdened by the treatment’s cost. Milton’s practice is in New York City and does not accept Haynes’ insurance.

“It’s been a battle with insurance,” Jessica Haynes said. “We did get the insurance company to acknowledge that they did not have an in-network provider capable of treating her, which was a large hurdle. …

“... They did say that they would process it to our in-network benefits. However, because he is not contracted with them, that means that we can be billed above and beyond.”

Abigail’s first procedure took place May 8 and cost $11,200. Only $300 was covered by insurance.

On top of medical bills, each trip to New York City costs approximately $1000 even though Haynes stays at the Ronald McDonald House.

“When it’s your kid, you do what you have to do,” Haynes said.

Therefore, the family has established a donation fund for Abigail at Wells Fargo bank, at 312 E. Main St., in Dahlonega. Checks must be made out to the “Abigail Haynes Donation Fund.” Donations can also be made electronically via Abigail’s Facebook page.

All excess proceeds from the fund will be donated to the Waner Children’s Vascular Anomaly Foundation in honor of Abigail. The foundation provides financial assistance to children suffering from vascular anomalies, funds research to understand and treat these anomalies, and supports efforts to educate the medical community on vascular malformations.

Readers can also keep up with Abigail’s treatment through her Facebook page.


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