Positivity: Mother’s Place for (Her Daughter) Grace
When a mother couldn’t get the treatment her seriously handicapped daughter needed, she orchestrated the opening of a clinic to provide it:
A place for Grace: Center here touts life-giving oxygen therapy
Stefanie Pervos
Correspondent for The Capital Times
February 23, 2006It was just a regular day in first grade when Grace decided she would no longer be needing her wheelchair. After just three years of Hyperbaric Oxygen Therapy treatments, Grace took her very first steps.
At the age of 3, Grace weighed only 11 pounds and was taking over 40 medications. She had a terminal genetic disorder that caused her to have frequent seizures and left her blind and unable to crawl, walk or talk.
Her mother, Shannon Kenitz, had tried all kinds of therapy with no success. Though doctors gave her little encouragement about Grace’s condition, her determination to give her daughter a better life never faltered.
“I wanted to know that when I let Grace go, I did everything in my power to keep her here,” Kenitz said.
Inspired, Kenitz began raising money so Grace could receive a treatment called Hyperbaric Oxygen Therapy (HBOT) in Florida. Soon, Grace regained her vision and her seizures ceased. Kenitz saw Grace’s incredible progress and needed a way for her daughter to continue receiving these treatments.
But no clinics in the Midwest provided HBOT, with the exception of one not-so-family-friendly center in Chicago. So with the help of investors, Kenitz opened the Wisconsin Integrative Hyperbaric Center in Fitchburg last August and named it “A Place for Grace” after her daughter.
“I wanted a mom to walk in this door and feel like she had whatever she needed,” Kenitz said in a recent interview.
While HBOT is not a cure, Kenitz contends it saved her daughter’s life. Today, Kenitz donates all her time to the clinic. She is also executive director of the International Hyperbarics Association, a nonprofit organization dedicated to the hyperbaric community, including doctors, patients and manufacturers.
According to the International Hyperbarics Association Web site, “HBOT is a specialized therapy that uses an increase in atmospheric pressure to allow the body to incorporate more oxygen into blood cells, blood plasma, cerebral-spinal fluid and other bodily fluids.”
Cells in the brain that lay dormant due to injury or illness are re-energized by the treatment and are able to repair themselves, according to Kenitz. It is used mainly for patients with autism, multiple sclerosis, cerebral palsy, or those who have experienced a stroke, traumatic brain injury or radiology.
Dr. Steven Koslov, a clinical professor of pediatrics and adolescent medicine for the UW-Madison School of Medicine, says there are other medical conditions where HBOT has proven effective. The use of HBOT treatment for arterial air embolism, decompression sickness, carbon monoxide poisoning, gangrene infection, crush injury, enhancing wound healing, exceptional blood loss, recalcitrant oseomyelitis and thermal burns have been approved by the FDA and the Undersea Hyperbaric Society.
Most patients are treated in sets of 40 sessions, two a day for about a month. At the clinic, 10 patients are treated per day. A total of 50 patients have been treated since last August. Though most patients are children, there has been an increase in the number of adults coming in for treatment.
About 50 percent live out of state, from places as far away as North Dakota and Kansas. The nearby Country Inn and Suites provides a special package for the out-of-town patients of the clinic. Kenitz said every one of her patients has seen an amazing improvement, with subtle changes becoming evident after only 10 treatments.
Juanita Jackson, a certified EMT and CNA, is a hyperbaric technician at the center. According to Jackson, patients need a prescription and consultation with a physician before they receive the treatment. Each patient wears a hood attached to two tubes: one for oxygen to flow in and the other for oxygen to flow out. Inside the chamber, children are usually accompanied by a parent.
After four to 10 minutes, the chamber will pressurize to the prescribed level. The treatment lasts for 60 minutes, plus an additional four to 10 minutes to return to regular pressure levels. While in the chamber, children often watch DVDs, read books, play games or take naps. According to Kenitz, parents who accompany their children in the chamber will feel fresh and invigorated when they come out.
Though HBOT has been around for over 30 years, it remains the subject of controversy. According to Koslov, there have been many reports of complications including lethal fires in the chamber, seizures, ruptured lung, ruptured eardrum, bleeding into the ears and severe ear pain and vision problems, though no incidents such as these have occurred at the Fitchburg center.
Because it’s impossible to do any double-blinded research, there is no way to prove the effectiveness of HBOT. Though this type of research is the definition of evidence-based medicine, it doesn’t mean treatments that have not met this standard do not work.
“A practitioner’s responsibility is to be honest with anyone to whom they are providing care,” Koslov said. “If there are therapies available that have not been proven, it may be appropriate to discuss these and then a patient has the prerogative to make their own decision.”
Koslov said patients are often looking for a “magic bullet” for conditions such as cerebral palsy or autism.
“There are limited resources and it would be best to direct patients to proven effective treatments,” he said.
For parents like Kelly Adams and Jennifer Kelly, who have witnessed unbelievable improvements in their children, it is hard to be skeptical of HBOT.
Roman Adams was the Wisconsin Integrative Hyperbaric Center’s first patient. Originally from Naperville, Ill., the Adams family moved to Madison for a special treatment and therapy program for children with autism. The Adams thought they had tried every kind of treatment available, when one of their doctors in Florida recommended HBOT.
Coincidentally, when Roman’s mother Kelly began doing her research, she learned that a clinic was opening up just down the block from her home. Roman, who has been receiving treatments since last August, has seen huge improvements in language and eye contact.
“It’s just been incredible,” Kelly Adams said. “The changes in him have just been amazing.”
Today, Roman “walks into the clinic like he owns the place,” his mother said. “He even looks forward to the time he spends there. It’s actually his little quiet time. In a day filled with therapy, he can take this time to sit and do nothing.”
Gianna Kelly was born with no blood in her body and a serious brain injury. It was a miracle she survived the first few moments of her life. After seeing an advertisement, her mother Jennifer Kelly decided to make the drive from Rockford, Ill., to Madison, to give her daughter a chance at HBOT.
At 16 months of age, after only 60 treatments, Gianna has shown incredible progress. The same child that was once pronounced brain dead by doctors now shows head control, alertness, mobility and vocal skills. Kelly said she can see her daughter’s development increasing every day.
….. Soon, the center will begin holding monthly educational meetings, adding facilities for intensive speech therapy, physical therapy and occupational therapy and a kitchen to teach parents how to cook healthy foods for their children.
The Wisconsin Integrative Hyperbaric Center is located at 6200 Nesbitt Road in Fitchburg. For more information call Shannon Kenitz at (608) 278-4268.
