Kathy's Commentaries

The Issue of Informed Consent

by Katherine A. Dettwyler, Ph.D.

Department of Anthropology,
Texas A & M University

In the midst of this discussion/argument about whether mothers should breastfeed and for how long, I would like to interject an analogy about a different topic, but which has at its basis the same issue, that of informed consent for the parents. The following are my humble opinions only.

I have a child with Down Syndrome. He was born in 1985 at Bloomington Indiana Hospital, after an uneventful pregnancy which included no ultrasounds and no amniocentesis and no AFP (alpha-fetal-protein) tests. I was 29 when I conceived and 30 when I gave birth. Peter had surgery at 10 days of age to correct an intestinal defect found in some children with DS. Peter today is 10 years old, can walk and talk and tell funny jokes, and goes to a regular school, in a regular classroom, with a modified curriculum. He starts 4th grade tomorrow! He can read at a 2nd grade level, his math is still kindergarten level. He is the light of our lives and a cherished member of his family, school, and community, with many many friends. What does this have to do with breastfeeding?

Peter was the next baby with Down Syndrome born at Bloomington Hospital after the 1981 birth and death of "Baby Doe." Maybe some of you remember this case. Baby Doe was a little boy with Down Syndrome who had tracheo-esophageal fistula (a hole between his windpipe and his esophagus), which can be correctly surgically, but if not corrected will be fatal. Like Peter's intestinal defect, this is found in some children with DS. Baby Doe's parents decided not to allow him to have the surgery. They decided that he should die. Since you can't legally "put children to sleep" like you can cats or dogs, the hospital kept the baby in the nursery but did not give him any food or water. It took him either 7 or 9 days to die, I forget which. Anyway, a long time. There was much hue and cry in the country at the time because of the obvious discrimination against Baby Doe in terms of the surgery simply because he had Down Syndrome. If the baby had been "normal" the parents would of course have allowed the surgery to fix the relatively minor physical problem. Am I angry at Baby Doe's parents for allowing their child to die? No, not at all. Why? Because I know that they were told by their ob/gyn that children with Down Syndrome are always severely mentally retarded. He told them that their child would never walk or talk, never recognize them as his parents, never know that they loved him or love them in return. They were told that children with Down Syndrome are vegetables, and that their child would have to spend its life in an institution, suffering only pain. And so I can understand perfectly why Baby Doe's parents chose death for him. They should not be made to feel guilty for the decision they made based on the misinformation supplied by the doctor. I *am* incredibly angry at the doctor for telling Baby Doe's parents all these lies. I do not understand his motivation. He apparently had a distant relative who was mentally retarded, though not with Down Syndrome. And yet, even though it is well-known that children with Down Syndrome are usually only mildly mentally retarded (Peter is borderline "normal" in IQ) many many textbooks still say things like "All children with Down Syndrome are severely retarded and are an economic and emotional burden to their families and societies." Many many people think that the handicapped lead lives of misery and are better off dead. Again, what does this have to do with breastfeeding?

When I hear that someone has gotten a prenatal diagnosis of Down Syndrome and has gotten all the most recent research and visited families with children with Down Syndrome, even met my own child Peter, and knows very well what it is like to have a child with Down Syndrome, and they choose to abort -- I respect that decision completely, and I don't think they should feel guilty about it for one minute. Some families are better able to deal with handicaps than others, and it would be extremely sad for a child with Down Syndrome to be born into a family that did not like the child for that reason. So if an *informed* parent makes a choice to abort, I respect that decision completely.

When I hear, on the other hand, that someone has gotten a prenatal diagnosis of Down Syndrome and chose to abort because they had heard that these children are "monsters" and are all severely retarded, that makes me angry. A little angry at the parents for not taking the time to get the facts, and a lot angry at whoever led them to believe that people with Down Syndrome are monsters. Because this attitude affects how my son is perceived, and how his society will treat him. I had a woman come up to me in a supermarket once and ask me "What's the matter with him?" and when I said "He has Down Syndrome" she replied "But he's cute!" Yeah, he's extremely cute. Then Peter said something about Louis Armstrong playing on the Musak in the store (he was about 6 years old) and she said "But he can talk!!!" And I said, yeah, he never shuts up! And he really likes Louis Armstrong. It turned out she had aborted a child with Down Syndrome because she believed all the awful things she had been told. She was amazed but also dismayed to see Peter, as she said she felt she could easily have dealt with such a sweet child who recognized Louis Armstrong songs (Peter is also an Eagles fan, big time).

So, what does all this have to do with breastfeeding?

If you don't want a child with Down Syndrome, don't have one. But don't tell me, or anyone else, that children with Down Syndrome are monsters, or are ugly, or are always severely retarded, or will never walk and talk, read and write -- because these statements ARE NOT TRUE.

If you don't want to breastfeed your child, or don't want to breastfeed for very long, that's fine by me. But don't tell me, or anyone else, that formula is "just as good," or that nursing an older child is "perverted" -- because these statements ARE NOT TRUE.

Just as I get angry when I hear that doctors have told someone that their child with Down Syndrome will be a vegetable, so I get angry when I hear that doctors have told someone that the benefits of breastfeeding stop at three months, or that children should be weaned at one year.

The issue here is the very same. INFORMED CONSENT. We all take risks with our children every day -- by taking them out in the car, letting them participate in sports, going hiking, traveling to foreign countries (my own daughter almost died of malaria in 1989 when she was with me in West Africa while I did research on infant feeding and child health). We all take risks every day, it's a part of life. But we should be taking these risks, and making these decisions, with our eyes wide open, with all the information available to us. The medical research shows that the health benefits of breastfeeding continue up to two years -- beyond that, the research has not been done, due to the low frequency of children nursing beyond two years in this country. If you nurse your child for 6 months, good for you! If you nurse your child for 6 weeks, good for you! If you decide that other factors in your life make breastfeeding not an option at all for you, fine -- be glad you live in a country with good sanitation, good medical care, and modern infant formulas. If you decide that any particular length of time breastfeeding is ENOUGH for you, and you don't mind losing the benefits of breastfeeding longer, fine. But please, please, don't go around spreading the misinformation that the benefits stop at six weeks or three months or a year. Don't go around spreading the misinformation that it is abnormal or wrong to be nursing an older child. Don't criticize people who have made the choice to give their children this best start in life.

Prepared  August 18, 1995.

Last updated March 16, 2004, by kad. Contents copyright 1999-2004 by Sue Ann Kendall and Kathy Dettwyler. Thanks to Prairienet, the Free-Net of east-central Illinois , for hosting this site from 1999 through 2004.

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