Bruce McClelland,
The Arizona Daily Star
John Kellerman, his adopted mom Theresa, and Scarlet O'Hairy
Bruce McClelland,
The Arizona Daily Star
John Kellerman, his adopted mom Theresa, and Scarlet O'Hairy
By Alisa Wabnik
The Arizona Daily Star, Sunday March 2, 1997, pages 1-2 Section
B
It was more than the usual mother's compassion that struck Theresa Kellerman two weeks ago when she heard about a 12-year-old boy missing from school.
``I wanted to reach out to the family and let them know we're here,'' the 50-year-old mother of three said. ``I thought, `It's no wonder he ran away.' ''
Daniel James Ramirez was missing for nearly 24 hours, after wandering away from Utterback Magnet Middle School. Police found him sleeping in a stranger's bed, after he apparently broke in through a window.
The child's behavior, which authorities attributed to fetal alcohol syndrome, seemed familiar to Kellerman because she sees the impact of the condition daily on her own adopted son, John.
Although he's 19, John's mental development more closely resembles a child of 10 or 12, his mother said. Emotionally, he acts about 6 or 7, she said.
``He's got testosterone coursing through his bloodstream, but he doesn't have the ability to control his emotions,'' she said.
Defense attorneys currently are using a similar explanation to persuade a judge that their client, 29-year-old John Patrick Eastlack, should be resentenced to life in prison rather than returned to Death Row for killing an elderly Tucson couple in 1989.
Attorney Carla Ryan argued in court last week that Eastlack's fetal alcohol syndrome contributed to the crime. Prosecutors blame the murders and robbery on greed and anger.
Whether the syndrome's effects provide a valid defense in court remains to be seen. But doctors, researchers and social service professionals agree that the disabilities caused when a mother drinks during pregnancy can forever alter the course of a child's life.
``There's no other cause of mental retardation that is more prevalent,'' said Ron Barber, Pima County program administrator for the state's Division of Developmental Disabilities. ``And it's 100 percent preventable, which is the real tragedy.''
John weighed 2 1/2 pounds, though he was just one month premature.
``He fit in my hand,'' his adoptive mother recalled.
She took him home six weeks and two more pounds later. But they were back at the hospital within six months, when John was diagnosed with a hole in his heart that required open-heart surgery at age 2. Doctors operated again one year later to correct his crossed eyes, also caused by fetal alcohol syndrome.
The condition had just been officially recognized in the United States when Kellerman began dealing with her son's problems in the mid-1970s.
She purposely adopted a disabled child, seeking ``to give these kids a better life than they would have had otherwise.'' Still, she was sometimes overwhelmed.
Kellerman said she cannot recall the exact cost of John's care, which was covered through insurance and state adoption subsidies in Colorado, where she lived before coming to Tucson 17 years ago.
But as a professional who runs a family support group and heads the FAS Resource Center for the Pima Council on Developmental Disabilities, she said the estimated lifetime cost to care for a fetal-alcohol child is $1.4 million.
Nationwide, the annual bill to taxpayers for expenses related to the syndrome is estimated at $321 million.
As a mother, though, Kellerman said the emotional costs run even higher.
``The heart surgery and the eye surgery were minor struggles,'' she said, ``compared to the behavior problems.''
``He was 1 1/2 the first time he fell asleep in my arms,'' Kellerman said, pointing to the rocker where she sat that night. ``I didn't put him down.''
The toddler years were better, as John became a loving and playful child, she recalled.
But problems began again around age 9, when his physical growth started outpacing his mental and emotional development.
``The inappropriate silliness remained, and it wasn't cute anymore,'' Kellerman said. ``He couldn't really control it.''
Such impulsiveness is one of the behavioral hallmarks of children with fetal alcohol syndrome, though few generalities can be stated about the group since alcohol affects children differently depending on when and how much mothers drink during pregnancy, doctors say.
The most severely affected children are those with fetal alcohol syndrome, though a more nebulous diagnosis of ``fetal alcohol effects'' is used by some physicians to explain lesser problems related to prenatal exposure to alcohol.
Physical attributes for those with the syndrome are often readily recognizable, however. Most fetal-alcohol children have shorter than average eye openings and a long, smooth philtrum, or area between the nose and upper lip, said Dr. Eugene Hoyme, a University of Arizona researcher.
They often have a thin upper lip and suffer from growth deficiencies, said Hoyme, a pediatrician and geneticist who specializes in children with birth defects.
At age 19, for instance, Kellerman's son is 4-foot-11 and 120 pounds.
``I get angry that I can't do the stuff that I normally would like to do,'' John said. ``Sometimes I've even gone so far as to curse my birth mother under my breath.''
According to the most recent county birth records available, fewer than one in 1,000 children born in Pima County in 1994 were diagnosed with fetal alcohol syndrome, said Hal Strich, planning director for the Pima County Health Department.
Statewide, there were 14 fetal-alcohol cases that year out of 70,896 births, with no clear trend showing an increase or decrease since the state first began recording the problem in 1989, according to the state health department.
But ``that's the very tip of the tip of the iceberg,'' Strich said. ``There's a lot of other kids who may be affected by alcohol, but it's not diagnosed that way.''
Hoyme said he would never officially diagnose a child with full-fledged fetal alcohol syndrome unless the physical attributes were present and the mother acknowledged drinking during pregnancy.
He cautioned against doubting a mother who says she did not drink, since there are many other possible causes for physical and developmental disabilities.
National data indicate that Pima County alone should expect 20 to 30 children born each year with fetal alcohol syndrome, he said.
But Hoyme said his clinics see fewer than that, mainly because of incorrect diagnoses or insurance companies' reluctance to fund fetal-alcohol referral visits.
Still, he said that doctors at 17 sites around Arizona - excluding Maricopa County, where at least half the state's births occur - have seen about 480 children since 1986 with some degree of prenatal exposure to alcohol.
Kellerman's son - an American Indian, like many fetal-alcohol children - is among Hoyme's patients.
``We have lots of data that indicate that alcohol is a major issue of all Native American tribes in the United States and Canada. And because alcohol is such a major social issue, it's also an issue that includes fetal alcohol syndrome,'' Hoyme said.
Eleven of the 14 fetal-alcohol cases reported statewide in 1994 are American Indians, according to the state health department. One year later, they made up three of 10 cases statewide.
``The important thing to realize is, this is not just a Native American problem. This is a problem that affects all of society, and we see children of all races,'' Hoyme said.
For many of these children, the problems they face at birth are just a small part of what they can expect through a lifetime dealing with a syndrome that has no cure.
The most common of these ``secondary disabilities,'' or those occurring later in life, is mental retardation, according to a study of 415 children and adults affected by fetal-alcohol exposure published last year by the University of Washington.
For 60 percent of those age 12 and older, problems in school and trouble with the law were also obstacles. And about half had bouts of inappropriate sexual behavior, the study states.
``There's a whole spectrum here, so it's not like they're all in trouble with the law, or they're all this way or they're all that way,'' said Dr. Robert Schacht, a researcher who studies fetal alcohol effects with the federally-funded American Indian Rehabilitation Research and Training Center in Flagstaff.
``The claim has been made that they aren't necessarily able to make good judgments about what's right and what's wrong, but that's controversial,'' Schacht said. ``It gets into a moral judgment kind of thing - is there something biological about our ability to make a moral judgment?''
``I don't think we have the resources to address that question effectively, but it's something that the legal system ought to be seriously looking at,'' he said.
``They do seem to be more vulnerable to adverse kinds of peer influences than the mainstream population,'' Schacht said. ``When they're over-stimulated, I once heard someone describe it as, either they implode or they explode.''
Though he loves to play drums and listen to bagpipes, he can't stand loud, unexpected noises. If there is a fire drill at school, he can't work all day.
Once, years ago, he kicked a hole in the wall when a toy malfunctioned. Now, though, ``I'm not so much into physical violence,'' he said proudly.
Still, his mother said he continues to have memory and other problems that probably will require assisted living even if he moves away from home.
``His strong desire now is to become independent,'' she said, ``but he's smart enough to know that he probably won't be able to do that.''
But she laments that he might not have access to many social services, either, since his IQ exceeds the cut-off for developmentally disabled people to receive state-subsidized support.
And in three years, at age 22, he will no longer be eligible to attend special education classes at Howenstine High School, 555 S. Tucson Blvd.
``He came to me once and said, `What's gonna happen, Mom? What's going to happen when you can't take care of me?' '' Kellerman said.
``I don't have answers for him,'' she said. ``And I don't have answers for the other parents.''
But Kellerman said she intends to keep fighting for services and prevention efforts until she finds some solutions.
``It's been real frustrating raising John, . . . knowing that his disabilities were preventable,'' Kellerman said. ``The mother drinks for nine months. Her hangover lasts for one day. But the baby's hangover lasts a lifetime.''
A patient handout explains why pregnancy and alcohol don't mix. Other education, prevention and research materials about fetal alcohol syndrome have been compiled by The Arc, a national organization on mental retardation. You can also join the mailing list FASLINK for further information.
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