When 10-month-old "Baby Klaus," as he has become known, was sent home to die after being diagnosed with hydrocephalus, also known as "water on the brain," his head had swollen to more than three times its normal size. His family in El Paso, Texas, was distraught. They didn't know what to do. Baby Klaus not only had a head measuring in at a 104 centimeters in circumference, but he was in obvious pain.
But thanks to the nonprofit organization Hydro Angels Over Texas, a group founded three years ago by hydrocephalus sufferer Sheri Burdine, Baby Klaus may get a second chance. With help from Hydro Angels, Baby Klaus is now receiving care at from neurosurgeons at the University of Texas Science Center in San Antonio, where, according to ABC News reports, doctors are slowly draining fluid from his brain.
Some one million Americans suffer from some form of hydrocephaly,
"Baby Klaus' El Paso doctors said there was nothing they could do, which was crazy," says Burdine, who visits Baby Klaus regularly and says his condition is indeed severe. "He was left untreated. There are many Baby Klauses out there in Third World countries, but this is America," she told AOL Health.
The baby's family recently held a press conference but are not revealing their identities out of protection for Baby Klaus. But his aunt, who contacted Burdine's group and is known only as Ericka, said Hydro Angels was the first to show the family some compassion.
"Nobody approached us with humanity," she said. "Everybody approached us with a clinical standpoint. They never offered any hope."
The baby's father said doctors told them Klaus had less than a year to live.
Hydrocephalus has many forms. Klaus suffers from congenital hydrocephalus and was born with the condition. But many people don't develop hydrocephalus until later in life. That was the case for Burdine who was diagnosed at age 11, after several misdiagnoses where doctors said her migraine-like headaches were part of going through puberty. "I was a very depressed child when it happened to me," she says. She remembers at one point even feeling suicidal because she felt so misunderstood.
Burdine doesn't want other families to go through that same kind of darkness. That's why she founded an organization dedicated to providing emotional and financial support to families dealing with hydrocephalus. Right now Hydro Angels is helping Baby Klaus' family pay for transportation to go back and forth from El Paso to San Antonio to see him, and Burdine herself visits Klaus a couple of times a week.
There is no cure for hydrocephalus, but it can be treated with surgery in which shunts are inserted to drain fluid from the brain. The shunts often fail though, leading to numerous surgeries over the course of a patient's life. Burdine has had eight brain surgeries over the course of her life. She is 44. "The only relief you can get is to get that fluid off," she says.
Burdine says she is very concerned about cases like Klaus' where doctors fail to provide the needed care, and she knows of many cases where people have been misdiagnosed. She says it's common for elderly patients to suffer from hydrocephalus and be misdiagnosed as having dementia. "My goal is to be the spokesperson and to educate doctors and hospitals," says Burdine. She is especially eager to get the word out to physicians working in rural hospitals where there may not be neurosurgeons available who are qualified to recognized and treat hydrocephalus. "I'm on a mission of awareness," she says. "Doctors told my mother I would not live to see 18."
As for Baby Klaus, he's not out of the woods yet, but he now has access to the care he needs, and doctors believe he could pull through, although they fear he may have some brain damage and may even be blind or deaf because of the swelling.
Dr. David Jimenez, a pediatric neurosurgeon, has already performed the first procedure to relieve some of the pressure in Klaus' head.
"I have operated on 1,000 cases of hydrocephalus, but nobody like this baby," Jimenez told ABCNews.com. "The thing that's interesting is that he went so far beyond what we've ever seen before."
Source : aolhealth
