Hello Lactnetters.  Some of you will remember the exchange about Down
Syndrome earlier this summer.  Here is a LONG piece on the issue of informed
consent.  It really does have something to do with breastfeeding and
breastfeeding advocacy.


The Issue of Informed Consent

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.

End of message.


Katherine A. Dettwyler, Ph.D.
Associate Professor of Anthropology, Texas A&M University
e-mail to [log in to unmask]