No More Waiting Room
Caroline DeLuca was a baby who couldn't crawl, couldn't talk, couldn't even sit up straight. Getting on her hands and knees was beyond her; her feet would shoot out behind her in a spastic motion.
Eventually diagnosed with cerebral palsy, that awfully vague term covering an awful lot of brain disfunctions, Caroline and her parents were given their marching orders: Give the baby physical therapy, occupational therapy and speech therapy. That sounds like it covers all the bases, until the patient's parents realize that if they'd gone for help 40 years ago, they would have been given the exact same medical advice. While the rest of the medical world has scored any number of breakthroughs in various diseases and conditions and now spends its days exploring genomes and DNA deciphering, cerebral palsy treatment has remained essentially as one medical person stated a bit sarcastically: "PT, OT and tincture of time."
For Elizabeth DeLuca this approach wasn't good enough. The River Oaks mother of four who says she wasn't used to pushing anyone around -- that's hard to imagine, watching her make her way through the medical world these days -- got very feisty. She was determined that, if nothing else, her daughter's problems were going to be attacked and solved.
Physical therapy was accomplishing little. Elizabeth shuttled her daughter from one appointment to another, always seeking new doctors, new treatments. Nothing was working. More bad news just rolled in day after day.
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So Elizabeth took her baby daughter diving. Took her right down, 16 and a half feet below sea level, and kept her there for one hour at a time.
It was the desperate act of a desperate woman.
Elizabeth and Anthony DeLuca did all the right things for their fourth child before she was born. Elizabeth took all the right vitamins, followed all the right regimens, had all the best medical advice. But something went wrong.
Caroline was born at eight pounds, eight ounces, and initial tests were good. About six hours after birth, though, Elizabeth's sister came in, looked for the baby and said: "Beth, the baby's blue!" "Pick her up, pick her up," Elizabeth said, buzzing for the nurse. By the time the nurse got there the baby's color was restored, and after 18 hours of observation the hospital concluded that the "blue" her sister had seen had been just a curtain shadow.
Her first day home, Caroline lip-smacked all night. Once again, Elizabeth said that something was not right. The next morning Elizabeth bathed Caroline and dressed her and put her in her bassinet and sat down and all at once got a panicked feeling. Rushing to the bed, she looked down and, as she says now, "She's black in the bassinet. I picked her up and thought she was dead." She didn't call 911, thinking it was too late for help, but she did call her pediatrician, who urged her to try mouth-to-mouth while the doctor conferenced her into 911. And baby Caroline did come back.
In the next six days Caroline turned blue more than 50 times. Eventually diagnosed as epileptic -- those were petit mal seizures -- the baby went home on a heart monitor and oxygen. Her body had gone limp, and she couldn't nurse anymore. By the time she was four months old she had braces on both hands. Still, Elizabeth didn't explore too deeply what was wrong; she was just grateful her baby was alive.
It wasn't until Caroline was eight months old that Elizabeth began to see all the things her daughter couldn't do, all the things that were so difficult, like putting her into a high chair. She took her child to a neurosurgeon who said he didn't think it was cerebral palsy, but concluded there had been brain damage. The doctor didn't talk about doing anything for Caroline, and a devastated Elizabeth left his office.
Devastated, maybe. Unresourceful, no. She asked where the physical therapy department was, hauled herself and her baby down the stairs to the basement department at Texas Children's and presented herself at the front desk, saying, "I need help here."
Told they couldn't treat her daughter unless a doctor told them to do so, she telephoned her pediatrician and told him she needed help. He, in turn, told them he was ordering up whatever tests Elizabeth DeLuca's daughter needed.
At one year, a neurosurgeon told Elizabeth he thought her daughter was retarded. "I said, 'That's ridiculous.' And stormed out of the hospital," Elizabeth says. But at 15 months, Caroline still wasn't talking. At another evaluation they were told the little girl suffered from apraxia and might never speak. Elizabeth remembers being completely frustrated and saying, "You people in this place take my child away from me in bits and pieces."
Therapy after therapy was added. They started oral motor therapy when it was noticed Caroline wasn't eating properly. Elizabeth haunted the Internet. She heard the University of Texas Medical Branch at Galveston was doing a study of cerebral palsy children. Her research led her to hyperbaric medicine and the Center for Wound Healing at UTMB-Galveston. She called every other day for two months until finally Dr. Kevin Barrett called her back. Caroline turned out to be exactly what he needed, an epileptic child who could go in the chamber.
Out of 277 children, ten were picked for the project. Caroline was one of them. There was no charge to the children involved because this was a research study.
Now Dr. Barrett's waiting list is too long to count.
The cream-colored chamber at UTMB-Galveston is daunting. Patients enter a claustrophobic submarinelike tube and have clear plastic hoods clamped over their heads. Oxygen is delivered through hoses attached to the hoods during the dive. Kids' ears hurt because of the depressurization, and most end up having tiny holes put in their eardrums or tubes inserted. Because of the fear of fire from the oxygen, patients can wear only certain types of clothing (no synthetics) and cannot wear makeup or use hair spray or carry newspapers into the chamber with them. As many as 12 patients can be treated at a time. A "tender," who is certified to handle hyperbaric conditions, goes in with them.
While an adult will usually go down 40 feet below sea level for 90 minutes of treatment, children go to 16.5 feet, which is the equivalent of half an atmosphere, for an hour, says senior technician Travis Kilpack. This means the oxygen they receive comes in at 150 percent. Adults, at their depth, receive 220 percent oxygen, he says.
The UTMB center did its first hyperbaric oxygen study on patients with closed-head injuries. The study was funded by the Moody Foundation. (Bobby Moody's son was in a Jeep accident years ago and was treated for the brain injury he suffered.) At the time of the first study, accepted medical advice was that by three years after a closed-head injury, "what you see is what you get," says Kevan Corson, technical director of UTMB's hyperbaric center. After lengthy hyperbaric oxygen treatments with a group of patients out that long or longer, "We proved there is function. We can get some of the stuff back.What we found out is, even many years out, the brain can still heal itself."
At 100 percent oxygen, the body is not absorbing any toxins, Kilpack says. The pressurized oxygen also shrinks the "bubble" of toxins already there, allowing oxygen to move in and take away inert gases. The body moves through its normal metabolic processes, but sooner than it would without the special mix of "air" it is receiving. "This is allowing the body to heal itself by giving it the things it uses to heal," Kilpack says.
A second study was under way on chronic stroke victims when Dr. Barrett, a research physician on loan from the Transitional Learning Facility with the Moody Foundation, began to be approached by parents who had read anecdotal evidence of the benefits of hyperbaric oxygen treatments on the MUMS National Parent to Parent Network (www.netnet.net/mums/Whyhbo.htm).
Since cerebral palsy is an unspecified form of brain injury, it was logical to do a study on it, Barrett says, which ultimately involved 15 children. As it turned out, at the same time UTMB was doing its study, McGill University in Canada was doing a similar one. They discovered each other at a medical conference last September in Atlanta. Their conclusions mirrored each other. Nearly all of the children got better. There was less spasticity, while gross motor function improved.
Caroline cried the first week she had to go into the chamber. Elizabeth would drive her to Galveston every weekday afternoon, leaving at two-thirty, returning at seven. Her three other children were left behind. "I hired people to watch my children, to cook for my children," she says. "We were going to suck it up for three months. There were days it was hard. Somebody was home crying."
Elizabeth's mother went with her. The first four weeks went by, and nothing happened. As she was driving along during the fifth week of treatment, from the back of the car Elizabeth heard the word "mama."
"I almost had a wreck." At about the 24th dive, Caroline started getting on her hands and knees. She could stay sitting up straight. They completed 60 dives. One of Elizabeth's dreams, that Caroline would come walking out of the chamber one day, is yet unrealized. And she readily admits she was very disappointed about that. But Caroline is back in her regimen of PT and OT and speech therapy and continues to progress. Nothing seems to be lost from what she gained from the dives.
Caroline has a chance to be in another hyperbaric study group at UTMB, and it would seem that her mother would jump at the opportunity.
"But I don't know if she should be in there and take the place of another child who might need this treatment more," Elizabeth says.
Medical research aside, the costs of hyperbaric oxygen treatments are not inconsiderable, and in most cases insurance companies will not pay for the treatment if it is applied to cerebral palsy. Use of a chamber is approved by the Food and Drug Administration for the treatment of a diabetic's wounds or carbon monoxide poisoning or to counter the effect of the bends. But that blessing has not been conferred upon it for use with cerebral palsy patients.
UTMB's Corson wants to open his own clinic on the side. According to his research numbers, it costs $150 for each dive at UTMB. He wants to staff a facility with a lot of trained medical volunteers and offer it to patients at $75 a dive. When word of this got out on the Internet, "I got more than 750 calls in one night," he says. Several doctors told him they would be happy to send patients to him.
But Corson's dreams were brought to an abrupt halt in the latest newsletter from the Undersea Hyperbaric Medical Society, an international professional association. Dr. Caroline E. Fife, UHMS president, reported on a meeting with the FDA about the use of hyperbaric chambers. Fife wrote that promoting or advertising hyperbaric oxygen treatments for anything other than FDA-approved treatments would be illegal. Even if a center made it clear that some of the treatments were experimental, this would still promote the treatment and thus violate FDA rules, Fife said.
This latest holdup "is bullshit," Corson says. He explains that the shunts used by cardiologists to do open-heart surgery are FDA-approved only for knee work, so their use in hearts is technically off-label.
A few insurance companies actually will pay the hyperbaric costs, Corson says, if it can be proved how much a patient's condition has improved and that money is being saved in treatment costs in the long run.
There are a lot of for-profit hyperbaric oxygen treatment centers, Corson says, not all of which are being operated in a very scientific manner. If there were enough science-related centers started like his proposed one, research would be sped up, Corson says. With a lot of centers simultaneously doing studies, there would be a much larger statistical group from which to derive data.
Of course, people (like Michael Jackson) can buy and risk using their own hyperbaric chambers. "There was a guy in Canada who had a hyper/hypobaric chamber in his garage. He was using it to treat his migraines," Corson says. "He died in there."
Take to the Internet and you'll find impassioned pleas asking parents to mobilize on behalf of hyperbaric treatments. Go to a special section of the KidPower Home Page (www.geocities.com/Heartland/Village/9021/hbo4rkids.html
) and you'll be asked to help persuade government officials to get the National Institutes of Health to look at case studies and then back additional research so the FDA will approve hyperbaric therapy for cerebral palsy.
"Once approval is gained by the FDA then the price should come down or at least insurance will help to cover the expense. It is not right that we have to deny our children a chance at higher functioning because a treatment that is working for others is denied to us," the site reads.
The MUMS site calls it the "HBO Movement" and wants the treatment approved so insurance and Medicaid will cover it. "If the preliminary studies are any indications, HBOT will eventually become a treatment of first choice for brain damage and will be covered by insurance and Medical Assistance. Parents will then be able to go to safe hospitals and clinics and get medically supervised affordable treatments for their children," writes Julie J. Gordon, director and founder of the MUMS network.
Barrett wants to do another hyperbaric study on children. "We're not able to predict right now who's going to gain and who's not going to gain," he says. The research physician's measured approach, of course, conflicts with parents wanting help now. Elizabeth DeLuca, who greatly admires Barrett, argues that the treatment is routinely used in Europe and Canada on children. "We're too cautious," she says.
But the last thing Barrett wants to do is be one of those medical researchers announcing a new cure, only to see it fall apart under scrutiny. "Physicians don't want to be seen as snake oil salesmen." His results, he says, "show us there's a glimmer of hope." But he wants to collect a lot more data.
"We do want to treat the children. And we want it to be safe," Barrett says.
Parents like Elizabeth DeLuca want it to be safe, too. But they want it to be sooner. Elizabeth looks at Caroline racing along with the help of a walker on wheels and has all the proof she needs. While waiting on more tests and more research, people with brain injuries are costing taxpayers millions of dollars yearly in treatment, she says. Not to mention the cost in lives being lived out in very limited ways -- when there's a possible cure sitting right out of reach.
And that's what Elizabeth wants to change. She wants her child to be special, but not "special" in the sense that she gets life-improving treatment denied other children. She wants all the children to get it, every one of them. Whether they have money or not. Whether their insurance companies will allow it or not. Whether they are the lucky winners of a medical research lottery that lets them get treatment while others linger unharmed but unimproved.
That's what Caroline wants, too, Elizabeth says. Because they're together in this. If anything good is to come out of her family's own trials with the brain injuries of their youngest member, let it be as much help as possible for the rest of the children in this country.
Push those legislators. Push the National Institutes of Health. Push the almighty FDA. Push the insurance companies.
Demand that they realize: Hustle time is now.
E-mail Margaret Downing at firstname.lastname@example.org.
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