"First, Do No Harm" from Dr. Kawira

From Dr. Kawira, SHED Medical Director:

The first patient of the day was, according to the chart, a 3 year old
boy. As the father carried him into the exam room, I noted that the
child was well nourished, nicely dressed, and appeared well cared for
and contented. I noted further, as the father settled the child into
his lap, and I got a good look at his face, that the child undoubtedly
has Down Syndrome.

"He doesn't talk", the father said. "He should be talking by now".

"Does he hear" I asked.

"Yes, if you tell him to come, he comes, but he doesn't speak".

As I got further history from the father, I found out that this was
the ninth child, and youngest. He had not started walking until 18
months of age.

As I examined the child, happy to find normal heart sounds (some Down
Syndrome children have congenital heart disease), I was also
considering how I was going to explain a chromosome abnormality to a
parent with no knowledge of modern biology or genetics.

I also found out from the father the treatment suggested by friends
and neighbors. A common traditional practice, considered now to be
among those "harmful traditional practices" that should be abolished
(as opposed to those considered benign), is to cut off the uvula, the
"V" of skin hanging down from the back of the palate, as a treatment
for chronic cough. Some neighbors advised that this child should have
his uvula cut as a treatment for his mutism.

With the help of my nursing assistant (who had never heard of Down
Syndrome but did his best to translate my words into the local Luo
language), I explained to the father that this child had been born
with a condition that had caused the delayed walking and the delayed
speech.

"He will talk eventually", I assured the father. "We doctors know
about children with this condition, and they all are able to talk". I
also mentioned slow learning in school, so that a teacher would have
to give special help to this child. I assured the father that
children with this condition have happy natures, and if they are given
love and attention, they will respond with love and affection. I also
emphasized to the father that he should never allow the child to be
injured in any way, such as cutting the uvula.

Although the father would not understand chromosomes, I trust that I
was able to give him enough understanding so that he will educate the
older siblings to love and treasure this special younger brother
within the large family unit.