THE VIRGINIAN-PILOT
Copyright (c) 1994, Landmark Communications, Inc.
DATE: Tuesday, October 4, 1994 TAG: 9410040024
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: Long : 231 lines
CHAZ FLOYD slowly stretches his small body and moves his arms over his head. Then, with a small push, he rolls over onto his stomach.
``Yeah, Chaz,'' applauds his mother, Pam Floyd. ``Isn't that great? He just started doing that yesterday.''
Chaz Floyd is 15 months old.
At 15 months, most babies are walking, running, climbing, jumping.
And Chaz Floyd has just rolled over.
Chaz has cerebral palsy. When he was 6 days old, he had a stroke. Caused, say doctors, by dehydration. Chaz wasn't getting enough breastmilk to nourish his 10-pound, 4-ounce body.
And so now Pam Floyd, 29, is on a mission. To tell women that some babies just don't get enough milk from breast-feeding. To tell women that sometimes your doctor isn't listening. To tell women that, like having a baby, breast-feeding isn't for everyone.
It's a message she'll deliver nationally later this fall when she appears on ABC's ``20/20.''
``All women should try breast-feeding,'' she says. ``But if their gut reaction is that this isn't working out, they shouldn't let a person talk them into doing it.''
You could say it's guilt that's catapulted Floyd into the national spotlight on this issue. Guilt that she didn't trust her own instincts when her baby kept crying. Guilt that she didn't ignore the professionals who
kept telling her, ``Oh, you're just a new mother, it's normal. Everyone can breast-feed,'' and rush Chaz into the emergency room. Guilt that she played the nice mother and good girl, while her baby was starving.
But it's anger that keeps Pam Floyd going, that's prompted her to take on this politically incorrect topic. A slow, steady burn that never goes away. That flares up every time Chaz, a blue-eyed, blond little boy with soft ringlets and a dimpled smile, tries to do something he can't, like crawl over to her for a kiss.
``And that's when it literally rips your heart out, and you go back through it; `why didn't I listen to myself?' '' says Pam. ``But a lot of it is just plain anger, because no one listened to me, took me seriously.
``No one wanted to take 10 seconds to listen to what I had to say.''
They're listening now.
Since a column in this newspaper about Chaz when he was 6 months old, the Floyds have been featured in a front-page Wall Street Journal article; interviewed for the ``20/20'' show; and appeared on the Los Angeles-based, nationally syndicated talk show ``Marilu Henner.''
Their story also prompted a similar feature on ABC's ``PrimeTime Live,'' although they weren't interviewed for it, and has been the basis for more than a dozen articles in other newspapers and magazines about potential problems with breast-feeding.
The media attention has been exciting for Pam and her husband, Frank, 30, who live in a working-class Norfolk neighborhood in a run-down HUD home Frank is restoring. The free trip to Los Angeles. The limousine ride. An afternoon spent with ``20/20'' reporter Lynn Sherr.
But when the television lights are turned off, when the reporters put away their notebooks, and when the phone stops ringing, they are still left with the reality.
Chaz. A 15-month-old baby who's just learned to roll over.
When your son has cerebral palsy, you learn to deal with doctors, hospitals, test and drugs. You learn to control a seizure without panicking, to bathe a limp child who can't hold his head up.
But Pam Floyd never realized that she'd learn another skill - how to wend her way through a bureaucracy. For the very people who are supposed to make this hell a little easier, often just make it worse.
``What do you mean Medicaid denied the claim? I have a letter right here approving it. I'll send you a copy.''
Pam Floyd slams down the phone. It's been five months since she ordered the bath chair for Chaz, a blue-webbed device into which he can be strapped for baths.
The medical supply company lost the order. Never bothered to call and tell her, though. But Pam has come a long way since people ignored her concerns about Chaz 15 months ago.
These days, she keeps a detailed list of every phone call she makes, every person she talks to, writing reminders to herself to double-check any promises made.
``I tell them my name and I can just hear them cringing on the other end of the phone,'' she says. ``I've got quite a reputation as a bitch.''
Like with Chaz's prone stander, a $1,270 device into which he is strapped standing up. It's supposed to strengthen his trunk muscles and enable him to use his arms to reach and play like any other child.
Ordered. Never came in. Salesman said her insurance had a $1,000 limit on medical equipment. But Pam knew better, and when she got confirmation and called the man back, he hemmed and hawed his surprise.
``He hadn't even bothered to check,'' Pam says disgustedly in her deep Southern accent, the byproduct of a childhood spent in the hills of Lynchburg.
You see, these people think she's stupid. Maybe it's the accent. Maybe it's the fact that, during his first year, when the family didn't have any private health insurance, Chaz was on Medicaid.
But Pam Floyd is not stupid.
Four years of college, jobs as a legal secretary, a claims processor, a bookkeeper. She never planned to be a stay-at-home mother, always thought she'd head back to work a few months after Chaz was born.
The family could definitely use the money. Frank works as a clerk at Food Lion, and his salary is stretched thinner than a politician's promise.
Chaz does get $446 a month disability from Social Security. But don't get Pam started on that.
She's been fighting with Social Security for three months now. They think Frank makes $1,800 a month, and told her they were cutting Chaz's benefits in half to compensate for Frank's ``raise.''
She tried telling the woman over the phone that he didn't make anywhere near that much.
Couldn't get anywhere.
So she gathered up Frank's pay stubs, packed Chaz into his special car seat ($250), drove downtown and spent a couple of hours waiting, trying to entertain a toddler who can't walk in a sterile government office, so she could prove her husband doesn't make $1,800 a month.
Then they lost the paperwork.
She made the same trip again, gave them the same copies.
A week ago, they told her it was all fixed.
Then she gets a letter saying she owes $642 in back payments because her husband makes $1,800 a month.
It's not even the idiocy of the system that gets to Pam; it's the way people talk to her. Like the Social Security office. ``Are you sure you understand that we're talking about gross pay, not net pay?'' asked the woman. Pam explained that she had done payroll for six years, that she knew about gross pay.
``And darn if she didn't ask me the same question five more times during the conversation.
``When you deal with these organizations, they talk to you like you're the dumbest, most uneducated person there was. You already feel low enough asking for help; they don't have to treat you like dirt.''
Chaz Floyd is lying in Karen Miller's lap, a red rubber ball in his mouth. This is one of two weekly physical therapy sessions he has to strengthen and develop his muscles.
Miller, Chaz's physical therapist, puts him on the floor and rings a bell near his right ear. He turns toward the sound and rolls over, a big grin plastered on his face.
A year ago, even six months ago, these sessions were hell. Chaz suffered from nearly constant seizures, was on two different medications, and was just plain miserable. He couldn't hold on to toys, let alone reach out and pick up one. Couldn't roll over. Didn't want to play.
Then the medications kicked in. The seizures stopped. And the unbelievable happened - a clear brain scan.
Now, he's a happy child who sits in a blue plastic chair ($550) on the couch next to Pam, playing with a musical toy and babbling nonsense.
``He keeps me sane,'' says Pam. For no matter how angry she gets, how frustrated she is, just sitting next to Chaz calms her down. She never yells in front of him, never loses her patience with him. He's like some drug she needs to balance the craziness of her life.
Unfortunately, he's also the catalyst that causes that craziness.
Sometimes, all Pam can think about is running away. Leaving her husband, her baby, leaving everything and heading for some deserted beach where she can sip pina coladas.
Especially when she gets hate mail from women who are so obsessed with breast-feeding that they think nothing of calling her a liar, accusing her of being paid by the baby formula companies and telling her to shut her mouth.
For the past 30 years, there's been a national movement to get new mothers to breast-feed. And in the past decade, it's begun working, with 56 percent of women leaving the hospital these days as breast-feeding moms.
But a story like Pam's - it has the same effect on breast-feeding that the Alar scare had on the apple industry, when reports of cancer-causing chemicals sprayed on apples led to a national boycott.
``Women used to say, `I'm going to try and breast-feed;' now they're saying they won't even try,'' says Laurie MacPherson-Smith, a certified nurse-midwife in Norfolk. ``It's like they have a good excuse not to even try.''
The state's public health department is trying to do damage control. It sent out a press release in August, noting that ``despite recent media reports that breast-feeding puts babies at risk for dehydration, breast-feeding remains the healthiest way to nourish your baby.''
Pam Floyd agrees.
``I'm not against breast-feeding,'' she says, over and over again. ``But it's not for everyone. No one would tell you that every woman should have a baby, or can have a baby; why do they say every woman can breast-feed?''
Instead, she wants her story to convince doctors, nurses and the people who write breast-feeding books to be clearer about the danger signs. And to listen when a mother calls and says something is wrong.
And for those who have accused her of being uneducated, of not having prepared for breast-feeding her son, who send her hate mail and make threatening phone calls, Pam wants them to see the 3-foot-high pile of books, pamphlets and videos she keeps on her kitchen counter. All read and watched before her son was born.
She knew about checking for six to eight wet diapers a day, a key indication that a baby is getting enough milk. And Chaz had wet diapers. But she didn't know they were supposed to be wringing wet. And her books didn't talk about the signs of dehydration in a baby - like a sunken soft spot on the top of the head.
Now she knows. But there won't be any more babies. Two weeks ago, if you asked her why, it was because she didn't know where she'd get the time or energy to care for another child; because she was afraid a ``normal'' sibling would make Chaz feel inadequate; and because she's terrified of having another disabled child.
But last week if you asked her why, the answer was different. Because Pam Floyd may need a hysterectomy. Fibroid tumors and an elevated estrogen level concern her doctors, who worry she has a higher risk for uterine or ovarian cancer.
She has no regrets if she has to have the operation. This decision, like every other decision she makes these days, is tied directly to Chaz.
``I'd rather be here for 40 years for him, than just be here for four years.''
Some good has come out of this story. Because of the publicity, the medical profession is beginning to talk more about the topic at conferences and in journals.
La Leche League International, which assists women with breast-feeding, is being more vigilant with its advice about checking for wet diapers and noticing the signs of underfed babies.
And last week, Pam Floyd had a call from a pediatrician in Denver. She wanted Pam to know that she'd just seen a mother with a 3-day-old, dehydrated, breast-fed baby. The mother had recognized the signs, the doctor said, because of Pam's story.
Mother and baby are doing fine. ILLUSTRATION: BILL TIERNAN/Staff color photos
Pam Floyd watches her 15-month-old son, Chaz, during his physical
therapy at Easton Preschool.
Frank Floyd plays with his son during a session with physical
therapist Karen Miller.
Chaz with his father. Chaz has just learned to roll over.
Graphic
IT'S YOUR TURN
The Floyds are trying to raise money to take Chaz to a special
center in Birmingham, England, called the Foundation for Conductive
Education. Donations may be sent to First Union National Bank, in
c/o of Chaz Floyd, 7912 Halprin Drive, Norfolk, Va. 23518.
KEYWORDS: BREAST-FEEDING CEREBRAL PALSY by CNB