Brightening a Girl's Smile

Collaboration and persistent care were able to treat the rare benign tumor on newborn Alyra Fallon's face.

Today, Alyra Fallon is a typical 3-year-old—a fiery redhead who is outgoing and inquisitive. But shortly after her daughter was born, Alyra’s mom, Heather, noticed something out of the ordinary—a shadow across Alyra’s face.

Today, Alyra Fallon is a typical 3-year-old—a fiery redhead who is outgoing and inquisitive. But shortly after her daughter was born, Alyra’s mom, Heather, noticed something out of the ordinary—a shadow across Alyra’s face.

“At first, my pediatrician thought it was just bruising, because Alyra was over nine pounds when she was born,” says Heather Fallon. But the shadow quickly became a hemangioma, a benign tumor composed of blood vessels that spread across her bottom right lip and the entire right side of her face, surrounding her eye. A tiny ulceration on her lip quickly became a prominent wound.

That’s when Fallon’s doctor realized that it was something more serious—and suggested they go to the University of Illinois Hospital & Health Sciences System for immediate evaluation and treatment.

Alyra was only a week old when the Fallons met Mary Lou Schmidt, MD, head of the division of pediatric hematology/oncology and associate professor of pediatrics at the University of Illinois College of Medicine. Schmidt attributed Alyra’s symptoms to PHACES , an uncommon association between large infantile hemangiomas and birth anomalies of the brain, heart, eyes, skin and/or arteries.

PHACES is an acronym that stands for the parts of the body it often impacts with abnormalities: Posterior fossa, Hemangiomas, Arterial, Cardiac, Eye and Sternal. Alyra is one of only about 500 known cases of PHACES syndrome.

The right side of Alyra’s cerebellum was filled with fluid instead of brain tissue and she had abnormally formed blood vessels in her head and neck, while her right eye was compressed due to the rapidly growing hemangioma.

Schmidt, who’s on staff at the Children’s Hospital of University of Illinois, which began accepting patients last June, collaborated with Beth Drolet, MD, a dermatologist and international leader in vascular abnormalities in children at Milwaukee Children’s Hospital. She was leading a clinical trial comparing steroids (the usual standard treatment for hemangiomas) to the chemotherapy drug vincristine. For the next few months, the family made a trip to Milwaukee every two weeks with follow-up at UI Hospital while Alyra received prednisone, a steroid drug.

“On the surface, we thought prednisone worked for her, but she ended up having stridor (wheezing and a tight airway) and her wounds increased,” says Fallon. At four months of age Alyra couldn’t nurse due to the wounds on her chin, and she couldn’t breathe well due to the hemangioma growing down her airway. A speech therapist helped Alyra learn to take a straw at five months old. One ulceration deteriorated the top of Alyra’s ear so much that reconstructive surgery is needed.

The prednisone was clearly not working. Schmidt could then have prescribed vincristine, the chemotherapy drug, but this would have necessitated placing an IV in a major blood vessel in Alyra—which would have put her at significant risk for a major infection.

At that time, in June 2008, Schmidt read an article in the New England Journal of Medicine published by French physicians that described 11 babies with very large hemangiomas who were treated with propranolol, a heart medicine. One hundred percent of the babies responded without any major side effects.

Schmidt immediately met with Fallon in the pediatric ICU and recommended propranolol for Alyra because the drug was oral and considered very safe, based on decades of use in babies with heart conditions, and despite having only the one report about use in infants with very severe hemangiomas like Alyra’s.

“I read the article, talked with Dr. Schmidt and we decided to start Alyra on the propranolol a week after the article appeared,” Fallon says. “Even before the second dose, you could see a difference. The stridor was gone, her hemangioma was a lot lighter and she could even open her right eye, which was being crushed by the hemangioma.” Alyra was discharged home from the ICU after two days of treatment but continued on the medicine at home for eight months.

The propranolol has been effective … with no complications. Alyra and her mom now visit UI Hospital for follow-ups, and MRIs are repeated every six months to monitor the abnormally formed arteries in her brain since she is still at risk of stroke.

The multidisciplinary team has since treated another 15 babies with very significant hemangiomas with propranolol, attaining excellent results. “This is one of those times in medicine where practice changed nearly overnight with the publication of the French study in the [New England Journal],” says Schmidt. “It’s been extremely gratifying to collaborate with ophthalmologists, cardiologists, radiologists, dermatologists and ear, nose and throat doctors, use the propranolol and protect these babies’ vision, hearing, airways and any structure that is being harmed by these tumors.”

Fallon, who is an ICU nurse at both Swedish Covenant and Northwestern Lake Forest hospitals, appreciated Schmidt’s collaborative approach during this trying time for her family. “She was excellent at providing options, especially since I was dealing with this more as a mom and less as a nurse,” says Fallon, who also has a 5-year-old son.

“Everyone at the University of Illinois Hospital has been fantastic, stepping up to take care of what needed to be done and providing excellent care,” she says. But Fallon particularly credits Schmidt’s dedication and personal efforts for Alyra’s successful treatment. “Without her commitment to her patients and staying on top of current research, Alyra wouldn’t be here today.”

And, what about Alyra herself? “She’s a smart, active, very normal 3-year-old,” says her mom proudly

Schmidt Helps Restore Hope:

The daughter of a pediatrician, Mary Lou Schmidt, MD, always thought she might be a pediatric surgeon. But a summer externship as a medical student at MD Anderson Cancer Research Hospital in Houston changed the direction of Schmidt’s future. “That experience exposed me to pediatric oncology and complex care cases with children of all ages,” says Schmidt.

After receiving her MD from the University of Louisville in 1985, Schmidt went on to her residency and a fellowship at Northwestern University and Children’s Memorial Hospital. She came to UI Health in 1992 and has since taken on roles as a teacher, clinician and researcher.

Chief of the division of hematology and oncology at the University of Illinois Hospital, Schmidt also serves as an associate professor of pediatrics at the College of Medicine and as the principal investigator for the merged Children’s Oncology Group Clinical Trials program at the University of Illinois, Rush University and Stroger hospitals.

“Forming a single program allows us to offer state-of-the art COG clinical trials, research resources, second opinions and treatment planning to any baby, child, adolescent or young adult who comes to UIC, Rush or Stroger,” she says. “In addition, by offering personal information and tissue samples, trial participants can help researchers worldwide who are working on new treatment options for the future.”