The surgeon gave Lisa Tansey an incisive diagnosis and a shocking prognosis after operating on her 18-month-old daughter.

“Your daughter’s airway was 90% blocked. She most likely had a week before it was completely closed,” he told her on April 12, 2016.

Doctors expected to find a simple polyp in the air passageway of Tansey’s toddler. They found a disease that would have suffocated her if not detected.

“Eden has recurrent respiratory papillomatosis,” the surgeon told her.

RRP is characterized by recurrent wartlike growths on the surface of the vocal cords or surrounding tissue. The growths often cause voice problems and if the lesions enlarge they can cause breathing problems. In 2016, Eden already had an aggressive form of the disease. She would likely need multiple surgeries throughout her life to maintain a viable airway.

“My world shattered that day,” recalled Tansey, a Hobart, Indiana, native now living in Frankfort.

As any parent would do, she and her husband, Jim, began researching the disease and how it would dramatically affect their daughter’s life.

“Against the doctor’s advice not to be terrified, I was terrified,” Tansey said.

The couple learned that the disease is caused by specific types of the human papilloma virus, or HPV, which is typically benign and found in 80% of people. However, RRP tends to recur because the virus persists in the tissue even after the growths are removed.

The disease would relentlessly

constrict Eden’s breathing, strangle her vocal cords and force surgery after surgery to keep it in check. Over the first five years of her life, Eden has undergone 34 surgeries. She will need more. No one knows how many.

“There are quite a few RRP patients who have had a few hundred surgeries, but we’re hopeful this won’t be the case for Eden,” Tansey told me. “Each time she has surgery, scar tissue forms on the vocal cords. Her voice will continue to get worse over time with repeated surgeries.”

Tansey’s life became a stressful balancing act of getting her daughter into surgery before her airway closed while trying to limit the amount of surgeries in order to prevent excessive scar tissue.

“I would literally lie awake at night, fearful that Eden could take her last breath and begging God that she would make it to surgery on time,” Tansey said.

Eden turns 7 on Wednesday. Her voice is a bit raspy, her breathing is a bit labored, but her spirit is anything but constricted.

“I can talk all day if I want to,” Eden told me with confidence. “And I can scream, too.”

This wasn’t a possibility until she was 5. Before that time, she rarely spoke to anyone outside her close circle. Her labored breathing and weak voice made it difficult for most people to understand her. She would often point or find a different word that was easier to pronounce.

“Thankfully, years of speech therapy have helped Eden become very articulate even when her voice is weak,” her mother said.

I asked Eden who can now hear her and understand her.

“Everyone,” she replied. “Except my teacher sometimes.”

Like most school students these days, Eden has to wear a facial mask, making it even more difficult for her to be heard. And harder for her to breathe.

“It’s OK, though,” she said after a recent Girl Scout gathering.

Eden’s grandmother, Carolie Warren of Hobart, said Eden finds joy in the most mundane of moments.

“However, she has begun to question why she is the only one with this disease and why God picked her to have it,” Warren said.

The RRP community recently lost a member who underwent more than 300 surgeries. The disease spread to his lungs. It required a tracheotomy. No other treatment options could save him. He was 33.

“After 32 surgeries, we slowly came to the realization that they were not going to magically stop,” Tansey said. “We needed to take more drastic action if we wanted to give Eden a reprieve from the traumatic and detrimental, but lifesaving surgeries.”

After taking Eden across the country and to Mexico City for various treatments throughout the years, the couple decided earlier this year to begin IV infusions of Avastin, a drug typically used in various cancers alongside chemotherapy. Eden is one of only two RRP children in the Chicagoland receiving Avastin at University of Chicago Medical Center. The other 7-year-old boy lives in Crown Point.

Until recently, the drug had been used only in very aggressive, adult cases of RRP where there was distal migration of the growths to the lungs. When this occurs, the growths have a tendency to turn malignant and become squamous cell carcinoma.

“It was very disheartening to learn that treatment for RRP patients is the same as it was nearly 50 years ago — repeated surgeries, which often lead to scar tissue,” Tansey wrote in an online piece for the Recurrent Respiratory Papillomatosis Foundation. “In 2021, this is unacceptable, and we are on a mission to improve the future for our daughter and everyone else living with RRP.”

They collaborated with an international expert, Dr. Simon Best at Johns Hopkins University, and with a group of researchers in Norway through Zoom meetings. (For more information visit www.rrpf.org or email Tansey at lisat@rrpf.org.)

“Jim and I had a heart-to-heart conversation about the paralyzing fear that now defined our lives. We decided we could no longer sit on the sidelines. It was time to tell our story and fight to find a cure for this dreaded disease,” said Tansey, the foundation’s chairperson for fundraising and donor engagement.

With help from a videographer, they created a video, “Eden’s Story,” which has been shared at medical conferences and viewed across the world. (Watch it at https://youtu.be/-NUJ6QAYRXs)

It’s a powerful video. Eden is adorable in it.

I asked her what she wants to be when she grows up.

“A hairstylist,” she replied in a shy whisper. “No, a teacher.”

I asked her mother for her daughter’s long-term prognosis.

“To be continued,” she replied.

jdavich@post-trib.com