The last hope for Jahi McMath to be kept on a ventilator may come from a former Long Island, N.Y., hairdresser who runs a brain-injury treatment center dedicated to Terri Schiavo, the Florida woman whose case sparked a fierce nationwide end-of-life debate.
The news of the possible transfer came as the state Department of Public Health confirmed Tuesday it is investigating Children’s Hospital Oakland and its handling of the Oakland, Calif., 13-year-old following her tonsil surgery and two other procedures to remove throat and nasal tissue, complications from which left her brain dead.
On Tuesday, the Terri Schiavo Life & Hope Network said publicly for the first time that it has been helping Jahi’s family for weeks to find a place to transfer the girl. The network has worked “in relative silence for the sake of the sensitivity of her case.”
“Jahi McMath has been labeled a ‘deceased’ person. Yet she retains all the functional attributes of a living person, despite her brain injury,” the organization said in a news release. “This includes a beating heart, circulation and respiration, the ability to metabolize nutrition and more. Jahi is a living human being.”
According to a court filing from the family’s attorney, the family is hoping to transfer Jahi into the care of the New Beginnings Community Center, in Medford, N.Y.
New Beginnings founder and owner Allyson Scerri shared a statement on her Facebook page Tuesday explaining how her facility “is about preserving life and treating brain-injured patients with care and dignity.”
“We do encourage every citizen to take the time to educate themselves more clearly on the issues of what brain death is and what it is not,” the New Beginnings statement read. “This child has been defined as a deceased person, yet she has all the functional attributes of a living person despite her brain injury.”
Jahi came to the hospital Dec. 9 for three procedures to treat her sleep apnea. But complications led to extensive bleeding and cardiac arrest; six doctors declared her brain dead.
The hospital has said it would transfer Jahi if her family and attorney meet certain conditions. On Monday, a judge extended an order keeping the girl on a ventilator through Jan. 7.
The family has said that the girl needs surgery implanting a tracheotomy line to help her breathe and a gastric tube to provide nutrition before she can be transferred to the New York facility, but Children’s Hospital officials have refused to do the procedures, saying it would be unethical to operate on a dead body.
Dr. Jessica Nutik Zitter, a San Francisco Bay Area physician who specializes in critical and palliative care medicine, does not have personal knowledge of Jahi’s case, but has practiced medicine for more than 20 years. She said that even in brain death, a body can only last for a limited period without nutrition.
“A body can’t go for much more than two to three to four weeks without nutrition,” said Nutik Zitter. “A young person may be on the longer end.”
Thursday will mark three weeks since Jahi was declared brain dead.
“Brain death doesn’t usually go on for several weeks,” she added. “The brain is responsible for autonomic processes and if the brain is not alive, certain autonomic processes will cease and result in eventual death.”
Zitter said she has never heard of a case where a family has fought to keep a brain-dead person on machines in hopes that he or she would recover.
Attorneys for the hospital submitted a 40-page motion late Monday arguing that the family already had ample time to find another facility to take over Jahi’s care and that she should be removed from life support. They argued her constitutional rights could not be violated because she was “dead.”
A judge at a state appeals court said Tuesday that the family and the hospital should submit arguments to his court on whether the girl should be kept on the ventilator by Friday.
As the family worked to make the move a reality, a California Department of Public Health spokesman confirmed the agency was investigating the Jahi case, but would not comment on ongoing probes or who requested it.
From June 2007 to June 2012, the department received reports of 1,459 surgery-related adverse events statewide, said spokesman Corey Egel. An “adverse event” is defined as surgery performed on a wrong body part or wrong patient, the wrong surgical procedure being performed, a foreign object being left inside a patient, or a death during surgery or in the 24 hours after surgery.
An investigation starts when the department receives a complaint from outside the facility, or if the health care provider self-reports an incident that may be linked to a problem with care or a legal or regulatory violation, he said. Investigations include on-site inspections, interviews with staff, patients or their legal guardians, and reviews of medical records and policies.
If deficiencies are found, a plan of correction is required from the hospital within 10 days, Egel said.
Hospital spokesman Sam Singer said Oakland Children’s welcomes the probe.
“We will cooperate with them fully and we’re pleased that they are beginning this process,” he said.
Christopher Dolan, the attorney for Jahi’s family, said: “I think it’s about time. Somebody from the outside needs to be looking inside to find out what’s going on in there.”
As the investigation became public, more information also emerged about the facility in New York that may accept Jahi for long-term care, and about the work of officials at the Terri Schiavo foundation to facilitate the transfer.
Scerri founded New Beginnings — an outpatient facility designed for patients with traumatic brain injury, and physical and cognitive disabilities — in 2011, four years after her father fell off his motorcycle and suffered a severe brain injury. The hair stylist became his primary caregiver and struggled to find adequate resources for him, according to the New Beginnings website.
At its opening in April 2011, the brother and mother of Schiavo participated in the ribbon-cutting ceremony, marking the first medical facility in the country dedicated to the Florida woman, according to a Newsday article. Schiavo, who was in a persistent vegetative state and not declared brain dead, was kept on life support for 15 years before being removed against the wishes of her siblings and parents.
Schiavo’s brother Bobby Schindler, executive director of the Terri Schiavo Life & Hope Network, disputed the idea of “brain death” in a statement Tuesday.
“Families and individuals must educate themselves regarding their rights as patients, the advance documentation that must be completed prior to any medical procedure as well as how to ensure ... any patient’s rights,” he said.
In a letter to Dolan, Scerri said the facility would accept Jahi into its outpatient center and eventually move her into a planned inpatient facility, now under construction, for long-term care.
“We will be providing Jahi McMath 24-hour licensed nursing staff and licensed respiratory therapists,” she wrote. “We are also hiring a pediatrician who will accept her as his patient.”
The family still must get Jahi to the facility. A letter from Medway Air Ambulance quotes a price of $31,910 to transport Jahi from Oakland to Long Island.
Medway flight coordinator Terry Hoard confirmed his company quoted the family a price and would have no problem transporting a brain-dead patient across the country.
By Matthias Gafni - Contra Costa Times (MCT)
(Staff writers Natalie Alund, David DeBolt and Kristin J. Bender contributed to this report.)
©2013 Contra Costa Times (Walnut Creek, Calif.)
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