The Issue of Informed
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
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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