Just before her son, Ian, was 2 years old, Lisa Bennett of Schenectady noticed his voice was weak, hoarse and raspy, and his vocabulary was poor.
At first, his primary care doctor wasn’t concerned, but when the condition continued, she recommended that Bennett take her son to see Dr. Jason Mouzakes, chief of pediatric ear, nose and throat surgery at Albany Medical Center.
Following surgery to remove possible tumors, Bennett learned her son had recurrent respiratory papillomatosis (RRP), a viral disease caused by wart-like growths called papillomas in the middle and lower respiratory tract, including the throat, voice box and trachea.
The human papilloma virus (HPV) — the same virus that causes sexually transmitted genital warts — also causes RRP.
“I kept saying there had to be a medical reason for his delayed speech because he’s a smart kid,” said Bennett, who found out she had genital warts when she was pregnant for Ian.
Bennett said she contracted genital warts from the father of her three children, aged 6, 5 and 4. Only Ian has RRP. She is no longer with the children’s father.
Mouzakes said the growths may be surgically removed, but they often recur, even after repeated surgical excisions. Some children have undergone many hundreds of surgeries.
“It’s a pretty horrible situation,” said Mouzakes. “Usually by the time we see these children, the warts or papillomas have grown within the airway, and they often have breathing difficulties.”
Few people have ever heard of RRP. The Center for Disease Control has estimated that while tens of millions of people in the United States are infected with HPV, there are between 10,000 and 25,000 people in the United States with RRP.
Genetic factors and impaired immune responses at the cellular level of the respiratory tract appear to play a key role in determining who is susceptible to contracting this disease.
“About 80 percent of us has been exposed to HPV,” said Mouzakes. “But most of us don’t get this horrible disease. “
Recurrent respiratory papillomas are detected in both children and adults, but they tend to be more aggressive in children.
For some patients, the disease will go into an extended or even permanent remission. For others, the growths may be quite extensive in the respiratory tract, requiring repeated surgeries.
“It’s not unusual for these kids to have hundreds of operations,” said Mouzakes, who is currently treating six children with the disease. “Unfortunately, we still have not solved the riddle of how to permanently treat this disease.”
Severe RRP can cause breathing difficulties and be life-threatening.
“We think that some moms who are afflicted with this condition pass on the disease to their unborn children through the bloodstream in utero,” said Mouzakes.
Surgery is generally done on an outpatient basis under general anesthesia. In the past, a laser was often used to remove the warts. But studies show that an instrument called a microdebrider, a device that rotates and suctions out the growths, causes less injury to surrounding tissue and lengthens the time between surgeries.
“You want to be as aggressive as you can be with these surgeries, but you have to be careful,” Mouzakes explained. “You don’t want to leave papillomas behind that might grow. But you don’t want to cause such injury that you have created another problem for the child.”
Mouzakes said all young women should consider getting the HPV vaccine to guard prevent cervical cancer and other diseases caused by certain types of genital human papilloma virus and to protect their future children from the possibility of RRP.
“I know that eventually there will be a cure,” said Mouzakes, who believes that researchers will come up with an anti-viral medication that will target the disease and reduce the recurrence rate. “But until then if I can only reduce trips back and forth to the operating room for these children, that would be wonderful.”
Most children have the warts removed about every three months with the microdebrider as opposed to every month with the laser, said Mouzakes.
Bennett said she is angry that more people, even health care providers, don’t know about this disease.
“After Ian’s third surgery, our primary care doctor asked, ‘So this is it. He won’t need any more?’ When in fact, he will have to have this for life until they find a cure,” Bennett said.
So far, Ian has had 10 surgeries.
“When he was younger, he was really good, but the ninth time, he tried to jump out of my arms,” said Bennett. “He’s old enough now to realize what they are doing, and he’s scared and doesn’t want to do it.”
Bennett said she feels a certain amount of guilt over her son’s illness.
“When he is going to have surgery and I’m sitting on the edge of my seat, and my son is crying because he doesn’t want to be put out with anesthesia, and they are putting needles in him — that’s when I feel it,” she said.
At the same time, she feels it’s important to educate young women about the importance of the HPV vaccine.
The vaccine is recommended for young women aged 11 to 26 and is being studied for women older than 26.
“I don’t want anyone else feeling the way I do,” said Bennett. “This is heartrending to go through. My hope is that nobody sees my son differently, and that he is successful and happy with himself as he grows up.”