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.
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.
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."