Dr. Beth Ann Drolet of Children’s Hospital of Wisconsin pioneered a new center to research and develop treatment for a fairly common occurrence in babies that can have a deadly outcome if allowed to grow.
A few months after Kayleigh Ali was born, her mother, Nicole, noticed Kayleigh’s stomach seemed enlarged and felt hard to the touch. Kayleigh’s pediatrician repeatedly assured the family that she was fine.
However, in January 2005, an X-ray revealed that the eight- month- old had tumors on her liver.
The rapidly growing tumors were non-cancerous masses of blood vessels, called hemangiomas.
Upon referral to Children’s Hospital, the tumors began to shrink. But within a month, the tumors began growing again.
Drolet and a team of physicians, nurses and surgeons struggled as they attempted to find an effective treatment for Kayleigh.
Then Drolet opted to try a procedure that starves the tumor of blood flow with the intent to kill the cells. The procedure carried a big risk: the liver could sustain damage.
At first, Kayleigh responded well to the starvation and showed signs of improvement, but then her condition worsened. Her enlarged liver began to place pressure on her little lungs. Kayleigh struggled to breathe, and her compromised liver was filling her body with toxins.
Drolet and her team tried everything they could think of. Sadly, Kayleigh died April 27, 2005, shortly before her first birthday. Losing patients is a fact of life for physicians.
“We could not have asked for more compassion,” says Nicole. “She (Drolet) shared so much of herself with us. She was not just our physician; she was someone who really cared for us.”
Vascular anomalies like the one Kayleigh had are largely confusing to the medical community. They look and behave very differently and affect many areas of the body.
Because relatively little research has been done on vascular anomalies, physicians are often uncertain about how to treat the tumors.
“Nationwide, very few hospitals have programs specifically dedicated to treating these tumors,” says Renee Prink, a spokeswoman for Children’s Hospital who nominated Drolet for a Health Care Heroes Award.
Drolet didn’t stand idly by after Kayleigh’s death. Drolet spearheaded Children’s Hospital’s initiative to establish the Birthmarks and Vascular Anomalies Center, which opened earlier this year. She serves as its
medical director.
“Many of us that are really frustrated in trying to get better answers,” Drolet says. “If you have cancer, you can say this is the best drug and it has an 80 percent survival rate. But we had to tell (Kayleigh’s) parents, ‘We don’t know. Let’s see how she’s doing next week.’ There’s no protocol. We don’t know. We want to do a better job.”
The center is rapidly becoming one of the nation’s leading centers for treating and researching hemangiomas. Seven studies are currently under way, and research has already been published
in medical journals. “The memory of the child she could not save has fueled her passion to help other children, and her tireless work continues to touch many lives,” Prink says.
Kayleigh’s family raised $25,000 to give to the center and sparked a wave of funding for the venture.
“It’s really inspiring to see,” Drolet says.
Beth Ann lectures nationwide to educate primary care physicians about hemangiomas and their potential
complications.
A large part of the center’s success was in Children’s Hospital’s initiative to bring Paula North here from Arkansas. North is a leading researcher in hemangiomas. She discovered the origins of the tumors: the cells are almost identical to those in the placenta.
“We have no updated drugs to treat this,” Drolet says. “We use things, but it’s by the seat of our pants. We’re looking at Kayleigh’s genes to see if something made her more susceptible
so we can treat things earlier and get better treatments.”
Through translational research where the clinician and researcher work together, transferring information from the bedside to the desk and back again, Drolet and North look forward to making big strides in their knowledge and treatment of hemangiomas.
