Treatment is a miracle to parents, an experiment to state
If only it hadn’t been a cloudless Memorial Day weekend, and Miguel Angel Lorenzo’s brother and cousins hadn’t removed the mesh fence from the pool. If only it hadn’t suddenly rained, and the boys hadn’t dashed in the house and left the back door ajar just enough for an infant to squeeze through.If only one of Miguel’s cousins hadn’t removed him from a playpen — and then left him on the floor — Miguel would not have toddled into the pool, where he floated for four or five minutes.
That’s all it takes to deprive an infant’s brain of enough life-sustaining oxygen to nearly kill him.
Now 28 months old, Miguel — the baby who had just learned to say ”Mama” and ”Papa,” but still pointed to things he wanted — lies prone in a hospital bed that dominates his nursery, all tubes and chirping machinery. He breathes with a respirator most of the time. He is fed through an opening to his stomach.
His parents, Juan Carlos and Yusimy Lorenzo of Davie, believe they can help Miguel get better by using a medical procedure originally developed to cure the life-threatening effects of decompression sickness.
If only the hourlong treatments were not hideously expensive and, by conventional medical standards, untested.
They want the state’s Medicaid insurance program to pay for the costly hyperbaric oxygen treatments — but the state, saying the treatment is experimental, has refused. So the Lorenzos are paying for Miguel’s treatments themselves — as they fight the government in court.
The state Agency for Health Care Administration, which oversees the program, argues hyperbaric oxygen therapy is unproven — and, thus, a poor use for precious state healthcare dollars, particularly during dire economic times. Florida is expecting a $3.5 billion budget shortfall for next year.
View the rest of the story at the Miami Herald.
The boy is showing some slight improvement according to the mother. However, I’m not convinced that Florida should even be involved with paying for this care. That should really be taken care of by the parents and other family members, particularly the families of the cousins who were also responsible for the boy’s falling into the pool. He has had 95 treatments so far.
Another story, also in the Miami Herald, is about another little boy who achieved a miracle, and the doctor who wants to help other families do the same:
Dr. Jeffrey Weiss watches anxiously as Nasser Helal, a technician, cleans and buffs a 13-year-old oxygen chamber. It’s shiny blue, shaped like a cylinder. He calls it his miracle-maker.
In 2002, Weiss bought the hyperbaric chamber and installed it in his Parkland home to treat his son Justin, a toddler whom other doctors said was in a persistent vegetative state after he slipped into the family pool Memorial Day weekend. The device was his last hope. And he grasped it.
Now, the chamber sits in a soon-to-open storefront clinic in a nondescript Margate shopping plaza where Weiss will use it — and three others he just bought — to help other families find miracles: Justin, now 7, sits up, attends school, watches The McLaughlin Group and The Disney Channel on television and likes to be read dinosaur stories — all things doctors once said were impossible.
”This is Justin’s chamber,” Weiss says, pointing to the long cylinder, which still bears adhesive marks from the photos family members taped to the exterior so Justin could see his parents and siblings as he spent perhaps 600 hours taking treatments.
”I have seen miracles,” Weiss says. “I have done miracles.”
At first glance, Weiss might seem an unlikely champion for a medical procedure that most mainstream physicians consider, at best, unproven: He is an electrical-engineer-turned-doctor, who did fellowships in ophthalmologic bioengineering at Harvard University and MIT, became chief of retina surgery at the Joslin Diabetes Center in Boston and invented a surgical procedure that can restore vision to damaged retinas.
But Weiss has embraced the role of maverick, one he never sought. Weiss made headlines in summer 2002 when he sued the North Broward Hospital District to force doctors to allow him to treat Justin in a hyperbaric chamber when he was admitted to Broward General Medical Center.
And he’s not alone in his support for the treatments.
”I came here as a nonbeliever,” said Dale Wells, a technician and physical therapist at Ocean Hyperbaric Neurologic Center. He used to treat severe wounds with hyperbaric oxygen at Mount Sinai Medical Center on Miami Beach. But during his first stint treating patients with brain injuries, he saw results, he said: Patients left after sometimes a few sessions walking better, talking better.
First developed as a treatment for decompression sickness resulting from diving accidents, hyperbaric oxygen now is widely accepted as a treatment for severe wounds, burns, radiation injuries, carbon monoxide poisoning, crush injuries and other conditions.
Although there is anecdotal evidence that it can improve even severely compromised brain function, most scientists agree there is scant clinical data on which to base a conclusion. And without the type of rigorous scientific research normally conducted on new drugs or procedures, insurance companies are extremely reluctant to pay.
”Everybody is sympathetic to the desire of these families who want to access these therapies that seem promising,” said Susan Pisano, spokesperson for America’s Health Insurance Plans, an industry association based in Washington.
”There is a lot of research that shows that much of what we do isn’t in tune with medical science,” Pisano added. “If what the healthcare system does is not in tune with the latest medical science, it is both wasteful and dangerous.”
At present, said Pisano and others, there simply isn’t enough evidence to show that hyperbaric treatments can improve the functioning of children deprived of oxygen.
Dr. Blane Shatkin, chief of staff at Memorial Hospital Miramar, who is board certified in hyperbaric medicine, said Medicare, the U.S. insurance program for elders, will pay for hyperbaric treatment for about 14 conditions, such as radiation poisoning, but Medicaid, a joint state and federal program for the needy, still considers the treatment for neurological conditions experimental.
”We push for clinical trials, for evidence-based medicine,” Shatkin said, adding: “There is no clinical trial that proves that a neurological injury is helped by hyperbaric oxygen therapy. . . . The bottom line is we need a good clinical trial to be done. There have not been any large trials.”
Perhaps Dr. Weiss will be able to provide the clinical trials that would demonstrate whether the treatment works, how many treatments are needed, and whether passage of time from the time of the incident is significant in regaining any function.