Departmental Doctors rally to save ‘Baby Klaus,’ born with massive head due to excess fluid build-up
Sheri Burdine remembers the day she received the phone call from a woman named Ericka in El Paso, Texas, seeking help for Baby Klaus.
The 10-month-old had been diagnosed with hydrocephalus— commonly known as “water on the brain” — and his head had grown to three times normal size. Local doctors had sent him home to die, offering no further care.
“When they found me, the family was in turmoil,” said Burdine, who is founder of Hydro Angels Over Texas, which provides support for those dealing with hydrocephalus. “I remember like it was today hearing that frantic, desperate voice. ‘Please help my brother’s family.'”
Even Burdine was not prepared when she met Baby Klaus. A normal head circumference at birth is 35 centimeters, but 10 months after his birth, his was 104 centimeters.
“It was one of the worst cases I had ever seen — even video from children in Ethiopia or Cambodia,” she said.
About 1 million Americans have hydrocephalus, according to Angels Over Texas. It is a complex condition in which too much cerebrospinal fluid, a clear liquid that normally surrounds both the spinal cord and the brain, builds up and collects in the cavities of the brain.
But today, thanks to Burdine, Baby Klaus, whose parents want to protect his privacy, is getting treatment at University of Texas Health Science Center in San Antonio.
There, in a series of operations, doctors will drain 30 pounds of fluid off his brain and then do complex reconstructive surgery, including taking apart the baby’s skull and putting it back together again.
The baby’s father, who did not want to be identified, called his son a “fighter and warrior.”
Last week, Dr. David Jimenez, a pediatric neurosurgeon, successfully performed the first procedure to relieve some of the pressure.
“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.”
Jimenez also doesn’t know if there has been any damage to the brain, but so far, he is optimistic.
“The baby moves his arms and legs, starts to smile and cries when people leave the room,” he said. “I think he knows who’s in the room — I don’t think he’s blind and deaf. When his mom had been away for a week or so, the minute she got back, the baby got so excited.”
Burdine, who lives in New Braunfels, Texas, knows first-hand the devastation that comes with a hydrocephalus diagnosis. She has had eight surgeries since she was diagnosed at the age of 11.
“The main thing the doctors kept telling [Klaus’ family] is that the baby is not in pain,” she said. “I know for a fact it hurts — with the pressure and the fluid surrounding the brain and nerve endings.”
Hydro Angels Founder Has Hydrocephalus
As a girl, Burdine began to have migraine-like headaches, visual problems and even the onset of some learning disabilities.
Eventually, she collapsed on the soccer field and was rushed to San Antonio for the first surgery.
“It came on quickly,” said the now 44-year-old from Texas. “I was stumbling, falling over myself and couldn’t figure out what was wrong.”
Doctors discovered she had hydrocephalus. But the diagnosis was nearly missed. Doctors assumed Burdine’s symptoms were part of puberty or that she wasn’t eating properly.
“My mother was told I would not live to see 18,” she said.
The build-up of fluid causes pressure and swelling on the brain and can lead to severe brain damage, vision impairment or death.
The condition affects people of all ages, from babies like Klaus to the elderly, and although there are effective treatments, there is no cure.
Hydrocephalus is the number one reason for brain surgery among children.
The condition can be congenital and, like Baby Klaus, begin in the womb, or it can develop during adulthood. Some of the causes for adult onset can be a brain tumor, a trauma to the head or anything that obstructs the flow of cerebral spinal fluid.
In the elderly, the narrowing of the spinal column can trigger hydrocephalus.
About 1 in 500 babies is born with hydrocephalus or diagnosed in utero. Ultrasound can detect additional fluid on the brain.
“But it’s not well known and doctors, especially in smaller areas can miss the boat,” she said. “People need to know more about hydrocephalus.”
Sometimes the condition is not immediately apparent until six or eight months later when the child shows symptoms like vomiting, clumsiness or delayed learning. Eyes turned in different directions or unexplained urinary incontinence can also be a clue.
Headaches can cause “intense, sharp” pain, according to Burdine.
Shunt surgery, to drain the fluid to another part of the body, was developed as long ago as 1952, but many doctors are not well-versed in new treatments, according to Burdine.
Baby Treated In Utero For Hydrocephalus
Today, surgery is performed in utero. Such was the case with Samuel Armas, who was treated at Vanderbilt Medical Center in 1999.
In an alternate procedure, third ventriculostomy, surgeons drill a small to divert flow around the surface of the brain. It has a higher success rate and less risk of infection.
Burdine’s life has been upended by hydrocephalus. She went to nursing school, but every time she jump-started a career, it was disrupted by a shunt failure and more surgery.
Now, she has a programmable valve, a pacemaker-like device, which has worked so well that she has not had a surgery since 2003.
“I am a bionic woman,” said Burdine, who has two children in their 20s and is a grandmother. “It slows down the fluid or speeds it up to keep me alive.”
In 2007, she founded Hydro Angels Over Texas, with the goal of helping families with support groups and educational resources. Fundraisers run by volunteers help offset medical costs and transportation.
The group’s motto, “We’re always here when you need us,” was a reality for Baby Klaus.
The baby’s Aunt Ericka, who had made the first call to Burdine, said until now, “Nobody approached us with humanity. Everybody approached us with a clinical standpoint. They never offered any hope.”
The baby’s parents, who have two other children, decided to go public with their story to bring awareness to hydrocephalus. They have been “overwhelmed” by the media, including requests to make a documentary film, according to hospital officials.
But Baby Klaus is in good hands, according to Lisa Beebe, who works as administrative assistant to Jimenez, the boy’s surgeon.
“He never gives up on a baby’s brain — ever,” said Beebe. “This is something he lives by. He has a love of these babies.”
Baby Klaus has also become the medical team’s favorite patient.
“The kid was shunned by society for such a long time, and now is totally over-loved,” said Jimenez. “He’s my favorite patient. I can’t wait to see him each morning.”
For more information about hydrocephalus, contact Hydro Angels Over Texas.
Original Story published here.