THE VIRGINIAN-PILOT
Copyright (c) 1994, Landmark Communications, Inc.
DATE: TUESDAY, June 28, 1994 TAG: 9406250043
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: BY DIANE TENNANT, STAFF WRITER
DATELINE: 940628 LENGTH: Long
My daughter has hydrocephalus, she tells people in the mall, on the street, in the grocery store. My daughter's very bright. She wants to be a doctor. You see, she's not retarded and she doesn't have a swollen head.
{REST} Crudup turns to her 3-year-old daughter, Jamile.
``What do you have?'' Crudup asks her.
``Hydroceph'lus,'' Jamile answers, without stopping her play. Then she holds up her doll, Ashley. ``She has shunts, like me,'' Jamile says.
Crudup smiles warmly. ``What did you do at the last support meeting, Jamile?''
Jamile taps Ashley's head with one finger. ``Operate,'' she says.
Hydrocephalus is anything but child's play to Crudup. A condition in which fluid collects in the brain, it usually means multiple surgeries and a lifetime of wearing a shunt - a plastic tube that runs from head to abdomen, draining the fluid from the brain into the stomach cavity or heart. Without treatment, hydrocephalus causes the head to enlarge dramatically, and crushes the brain until the victim is mentally retarded and helpless.
That extreme condition is almost unheard of now, thanks to ultrasound diagnosis and surgery on infants. It still means, for some, learning disabilities and other difficulties. But sometimes, the most difficult thing to overcome is the stereotype.
Most people still equate hydrocephalus with enlarged heads and mental retardation, an image that Crudup is determined to overcome.
Hence, her walking up to complete strangers, and her unrelenting work to establish a support group that emphasizes parental knowledge and advocacy on behalf of their children.
Crudup believes parents have to thoroughly understand their child's condition to be able to discuss it knowledgeably with doctors, and to ensure that children with normal intellect do not end up in special-education classrooms. She believes in building self-esteem, so her daughter can comfortably counter the inevitable questions about the slight bulge of the shunt that runs down her neck, and the occasional shaved head that accompanies surgery.
``I want her to say, `I have hydro, I had to have a shunt revision.' They will leave her alone then because she's confident, and she can educate them, too,'' Crudup said.
``I'm gonna take Ashley to the doctor,'' Jamile earnestly told her mother. ``I'll be right back.'' She scampered for her toy doctor's bag.
``When I tell people she has hydro, they want to offer me their sympathy or they say, is she retarded?'' Crudup said. ``It's so taboo. People will talk about a Down's syndrome because it's visible, they'll even talk about spina bifida. But when you say hydro, they don't understand it.
``People are still uneducated about a lot of things, which causes them to discriminate. People looking at her would never know she has hydro. I make it a point to tell them.''
Hydrocephalus occurs about 27 times in 100,000 live births. There are three causes: premature birth, infection such as rubella in the mother during pregnancy, or - in older children and adults - head injury or serious infection.
Jamile, who weighed only one pound at her premature birth, developed two different kinds of hydrocephalus after blood vessels in her brain broke. She wears two shunts, one from the top of her head, and the other from the side.
She appears to be developing normally, other than slightly crossed eyes and a slight problem with balance, said Dr. Frank P. Schinco, her neurosurgeon.
About 40 shunts a year are installed in infants at Children's Hospital of The King's Daughters, Schinco said, and up to 150 operations a year are performed to repair or lengthen shunts in existing patients.
A coil of extra tubing is placed in infants so that as the children grow, the tubing can unroll and ``grow'' longer. Under ideal circumstances, no further surgery will be needed until the teen years, when the drainage tube and the tube in the brain must be lengthened.
But few patients are ideal, and extra surgeries are often needed to unclog the tube, repair the valve or clear infections around them. The warning signs of shunt malfunction include headaches, nausea and falling school grades.
Once patients reach adulthood, however, shunts seldom become clogged.
Schinco estimated that 60 to 70 percent of hydrocephalics lead normal lives. ``Certainly a lot of kids that we see . . . go to school, have normal IQs, ride a bike, do everything kids can do,'' he said. He tells his patients they can even play noncontact sports.
But Guardians of Hydrocephalus Research Foundation in New York estimates that only 10 percent lead normal lives.
Crudup, president of the local chapter of the Association for Hydrocephalus Education, Advocacy and Discussion, doesn't buy the depressingly low statistics.
``The majority of people who have hydro do fine,'' she said. ``For every two that fit the stereotype, there are seven or eight that don't.''
Liz Welker, 28, founded AHEAD. She has a college degree, one child and another on the way. She also has a shunt.
``I had a college professor say to me, `Retards don't go to college,' '' Welker said. ``And I said, `That is right, they don't, and I'm not retarded.' It's people like that that make us feel so insecure about ourselves.''
Steve Cox, a former place kicker for the Washington Redskins, developed hydrocephalus in his 20s, and wore a shunt during his playing career. Now a banker in Arkansas, he has recently agreed to become involved with AHEAD, Crudup said.
Tracy Davis also has experienced subtle discrimination. While choosing a school for her 6-year-old son, Tyler Bonney, Davis explained his condition to the administrators at the first facility she visited. Although the only problem he has is occasional migraine headaches, they told her he wasn't ready for first grade.
``I thought I was approaching it the right way, by being honest and open,'' said the Norfolk woman. Instead, she decided not to discuss his condition with other schools until he was accepted on the basis of his ability and performance.
Parents must always be alert for symptoms of shunt failure, but teachers may be the first to notice subtle slowdowns in learning.
Schinco said he has known shunt malfunctions in A and B students to cause their grades to drop. ``Pressure from the inside can cause their intelligence, memory and intellect to be affected,'' he said. ``Very quickly (once the shunt is repaired) they get back to their A and B status.''
New methods of treating hydrocephalus may ultimately mean no shunts for some children. Some patients can be treated by opening a hole in the brain with lasers, large enough to allow fluid circulation to be re-established.
As difficult as it is to face surgery, some parents have more trouble accepting that their children will carry a shunt in their bodies for the rest of their lives.
Crudup doesn't let that bother her, nor does she let it stop Jamile.
``People can say these are the cards God dealt me, but I can play cards,'' she said. ``I'm going to turn this game around. I'm going to win this game.'' by CNB