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“Where there is charity and wisdom, there is neither fear nor ignorance.”

Medically Complex Issues

History of NADS

Complex Medical Issues

Baby Doe Law

In the 1970s and early 80’s, NADS and other advocates fought against the practice of some medical professionals who recommended that infants with Down syndrome not receive life-saving surgeries for conditions such as duodenal atresia or esophageal atresia. Instead they wrote orders that the babies not be fed, and the end result was that babies were starved to death in quiet corners of some hospitals.

Medical IssuesIn 1982, a Bloomington, Indiana baby with Down syndrome, known as Baby Doe, was born with esophageal atresia. Because the baby had Down syndrome, the parents were encouraged by their doctor not to give permission to operate. When word of the situation became public, a dozen families came forward and offered to adopt the baby. The offers were refused. The parents, their doctors, and the Supreme Court of Indiana said they had the right to starve the child to death. The baby died seven days after birth, before the U.S. Supreme Court could hear an appeal to the Indiana decision. This case and that of Baby Jane Doe in New York outraged advocates, who worked tirelessly to get the U.S. Congress to pass legislation in 1984 prohibiting the withholding of "medically indicated" treatment from any child born with a disability.

The Surgeon General of the United States at the time of these incidents, C. Everett Koop, stated publicly that he disagreed with such withholding of treatment. In his decades as a pediatric surgeon, Dr Koop had repaired hundreds of such defects, with a continually improving rate of success. By 1982, success was nearly certain if the surgery was performed. Because of the public outcry, the Baby Doe Amendment was added to the Child Abuse Law passed in 1984 in the United States, and it set forth specific criteria and guidelines for treatment of seriously ill and/or newborns with disabilities. This law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is “virtually futile” in terms of the newborn’s survival.  Opinions about a child’s “quality of life” are not valid reasons under this law for withholding medical care.

This was the climate that NADS was trying to navigate as these complex issues arose. Sheila Hebein, NADS’ Executive Director, served on the Pediatric Bioethics Committee of Lutheran General Hospital for several years during this time. She learned a lot about the complexities of many situations that parents had to deal with, and she was able to contribute much to the discussion from a parent’s perspective.

Medical IssuesThe Dilemma of Down Syndrome and Early Detection

In 2007 NADS’ Executive Director spoke at a conference for Genetic Counselors:

Now that Down syndrome can be detected earlier, our concern is that the medical community, which has shown biases in the past, will once again be placed in a position of great influence over life and death decisions. Will doctors be able to sensitively discuss the diagnosis with the parents? Will they be able to tell of the gifts as well as the challenges? Will they give the parents a balanced picture so that they can make an informed decision about what is best for them - for ultimately, it is the parents’ decision to make. They could even say no to the testing.

Medical IssuesPerhaps one of the problems is that unlike pediatricians and family practitioners, obstetricians and most genetic counselors don’t often encounter children with Down syndrome in their practices. They don’t see the baby they gave dire predictions about grow to be a beautiful child. They don’t know that children and adults with Down syndrome are now very much part of our communities - not hidden away but celebrated and cherished by their family and friends. Many children with Down syndrome grow up to be artists, dancers, musicians, figure skaters, soccer players, students, employees, voters and just plain old citizens. However, regardless of their abilities or challenges, our children should not have to earn a place in our society. NADS has always fought for a level playing field for children with Down syndrome before and after they are born.

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