Treatment, not abortion

Like other three-year olds, Stefan Slowinski Jr.'s idea of fine dining is a Happy Meal. He loves to run, jump, and climb. He speaks about 1,000 words, knows his colors, alphabet, and numbers 1-10, and likes to draw. He picks out a Reader Rabbit CD-ROM, loads it into the computer, and works the thing better than some adults. He attends a regular preschool and various community programs in Cherry Hill, N.J., and, says his mother Toni, "He's never ill." Stefan, like about 1 out of 900 other children, has Down syndrome, a genetic abnormality of the 21st chromosome. Once, Stefan and other kids with Down syndrome were called names because of the appearance of their eyes and inevitable mental retardation. Once, most did not survive to adulthood. An Ohio couple whose daughter was born with Down syndrome in 1957 reported that when they sought the advice of their minister (whose wife had also borne a child with Down syndrome), the minister "very nicely told us they had opted to not having their baby fed and the baby died." The couple's obstetrician and pediatrician both advised institutionalization. Their baby died of pneumonia after two months in foster care while the parents searched for an institution they could afford. Today, most Down syndrome kids don't make it to birth. Since the early 1980s, prenatal testing has been able to diagnose Down syndrome-and almost nine out of 10 parents have responded to the diagnosis by aborting their babies, according to the journal of the American College of Medical Genetics. The study published in the November/December issue of Genetics in Medicine concluded, "The effect of prenatal detection and the choice of elective termination produced a significant decrease, between 1972 and 1994, in the portion of Down syndrome fetuses who were liveborn." There are plenty of scary stories and misconceptions to panic parents who get this news about their unborn children. Laurie Ball-Gisch of Midland, Mich., reacted typically to the prenatal diagnosis of her daughter's Down syndrome: "We went through a period of shock and fear and anger." Parents hear about not only the physical differences, but the likelihood of recurring infectious diseases due to low immunity, and also reduced muscle tone, eyesight and hearing problems, delays in walking and talking, and tendencies toward other diseases. All of these warnings push many parents to choose abortion. Doctors or genetic counselors warn parents-and may also pressure them, many parents report-that Down babies could require tens of thousands of dollars in medical costs. Cyndee Aldridge of Katy, Texas, remembers being told "how miserable my life would be with a 'retarded' child; how much heartache there would be because of all of her health problems; how she would never be able to live a normal life, and therefore, neither would I." Stefan and Toni Slowinski heard about their son: "Sadly, he will be retarded. He won't have enough sense to get out of a burning building." Doctors and genetic counselors who push abortion on grieving parents often don't tell these parents that the prognosis for children with Down syndrome has been changing. Allen Crocker heads a program for such children at the Children's Hospital in Boston. He reports that in the last five to 10 years, he has seen a "steady increase of families who, having gotten the prenatal diagnosis, come to us to get a more broadly-based file of information. We assist them in finding new confidence to meet this challenge." When parents learn that it does not necessarily cost more to raise a child with Down syndrome than one without it, Dr. Crocker says, "It is rare that they don't continue the pregnancy." According to Dr. Crocker, "The diagnosis of Down syndrome used to be bewildering-but of those parents who come to us now, more are saying, 'he's my child, I'll love him, and thank you for telling me....'" In fact, the October 1998 American Journal of Genetic Counseling announced that the abortion rate of babies with Down syndrome dropped from 90 percent in 1992 to 70 percent in 1996. Dr. Crocker attributes this decline partly to "the new integration of people with Down syndrome into our culture. They are with us now ... the condition is not so 'shocking' anymore." He points out that the public mind has also been influenced by high-profile people with Down syndrome such as Chris Burke of the television series Life Goes On and Jason Kingsley and Mitchell Levitz, who together wrote the remarkable book, Count Us In. But there's more. Advances in medical treatment-for example, cardiac surgery-have greatly improved a Down syndrome child's chances for good health. Support groups and other forms of education, along with specialized therapies-physical, occupational, speech, and cognitive-have had an impact. Just keeping Down syndrome kids in the family and loving them vastly improves their chances of health and happiness, as the noninstitutionalization trend of the last 20 years has proven. But the big news is that there is a new way of understanding the effects of that extra chromosome that causes Down syndrome, and this understanding has resulted in a new treatment based on nutrient analysis and replacement. The new treatment began with Dixie Lawrence Tafoya of San Jose, Calif., a mom who wouldn't take the grim prognosis lying down. In 1990, a couple brought a baby girl with Down syndrome to the Baton Rouge, La., attorney's office where Mrs. Tafoya worked. They wanted to place the child for adoption. "They were financially and otherwise able to take care of her. Her disability alone was the reason they chose to place her for adoption," Mrs. Tafoya recalls. "I adopted her because I did not care that she was disabled and because first and foremost, I wanted desperately to be a mother and this baby desperately needed a family; in short, we needed each other." Although not a scientist, Mrs.Tafoya had taken classes in biochemistry, biology, and genetics. Now, as she concentrated on Down syndrome, her knowledge of nutrition made her wonder if some of her daughter Madison's physical characteristics could be linked to vitamin and other nutrient deficiencies. For example, Down syndrome usually gives the child's body a "rag doll" limpness. Mrs. Tafoya theorized that this joint laxity-and the structural heart defects that affect these children-could be a collagen problem. After all, she reasoned, Down syndrome is caused by a disorder in the same chromosome that controls collagen development. Her research led Mrs. Tafoya to the work of Henry Turkel who, in the 1930s, attempted to treat patients with Down syndrome with "micronutrients." She also studied other, more recent research on metabolic differences in patients with Down syndrome. After contacting scientists and geneticists around the country, she soon developed her own nutrition-based treatment, which she began to give to her daughter Madison. After six months of nutritional therapy, Madison's connective tissue and ligaments had improved significantly. Her metabolic profiles-blood, urine, and hair tests-revealed that she was also gaining a normal balance of other vitamins, minerals, and amino acids. In time, other symptoms of Madison's Down syndrome responded to this nutritional therapy, which Mrs. Tafoya named Targeted Nutritional Intervention (TNI). Mrs. Tafoya is not alone in trying to find ways to lessen the impact of Down syndrome. David Swenson, a chemistry professor at Saginaw Valley State University in Michigan, writes, "Comparisons of children with Down syndrome to other children show that the differences between the two become more profound as the child ages." Two studies, from the Children's Hospital of Boston and from the Department of Neuropathology at the University of Toronto, found that the neurons of an unborn infant with Down syndrome are like those of a normal infant. However, after about four months, an excess of hydrogen peroxide in babies with Down syndrome causes apoptosis-cell death-leading to mental retardation. The Boston study concluded that the degeneration of Down syndrome neurons could be prevented by the use of antioxidants, such as vitamins A and C. The Toronto study also provided more information about how Down syndrome may be degenerative-and, in theory, how it could be held back. On the medical agenda now is a study to document the effects of TNI. Lawrence Leichtman, a Virginia Beach, Va., geneticist and pediatrician, is convinced that TNI works. He plans a double-blind study to bring hard evidence to his observations-after treating Down syndrome children for 20 years, and prescribing TNI for the last four-"that there is a significant difference in general health and growth" for children with Down syndrome using TNI. But in the meantime, the good news is spreading that raising a Down syndrome child is a joy and an honor. Clover Lea of Montserrat says of her 4-year-old son, "Noah seems to draw out of us the goodness that's there ... or maybe he slips some of his own goodness into us somehow. His excitement in new things is contagious. Moonlight and shadows, bird songs and sunsets, lizards and turtles enthrall him, and he must take us to see it all." Many other parents also confirm that, even if their children have extra problems, families learn invaluable, life-changing lessons. Bob Newberg of Germantown, Md., says, "Our Mary has such a big heart. We are learning to love and to forgive from our 4-year old daughter." Ginger Houston-Ludlam of Edgewater, Md., concludes, "God does things on purpose that may not fit into our own personal agendas, but are far better than anything our agendas have to offer." -Janet Maxim is a writer living in Maryland.