CLOSE-UP
Tay, Sachs
ordeal
ADRIEN CHANDLER
Special to the Jewish News
•
A
ndrea was a beautiful baby
— happy, smiling, with a
sweet face, porcelain skin
and large soft eyes fringed
with long, dark lashes. Her
mother says she was the kind of in-
fant who woke up pleasant and hard-
ly ever cried. "She was almost too
good to be true;' says Thresa Yerman
of Livonia.
Terri knows what kind of tragic
irony that statement holds, because
her daughter Andrea was a victim of
Tay-Sachs disease — an incurable and
deadly nerve disorder that robs its
victims of their senses, their muscles,
their minds and eventually, their
lives. Andrea only lived to be 4 years
old.
Tay-Sachs is rare, though the car-
rier rate among Jews of Eastern Euro-
pean or Ashkenazi origin is approx-
imately one in 25 and 10 times higher
than in the general population. Na-
tionwide, over a 15-year period
(1969-1985), only 550 high-risk
couples, where both mates have the
trait, were found.
In Detroit, seven high-risk couples
have been found since screening
began in the early 1970s, says Pat
Christoferson of Henry Ford
Hospital's genetics program. Of those
couples, there were only six Tay-Sach
pregnancies. That's out of more than
7,000 people who have gone through
a Tay-Sachs screening.
With heavy screening, the in-
cidence of Tay-Sachs disease in the
Jewish population has declined
significantly. But many people false-
ly believe that marriage to a non-Jew
means they can escape Tay-Sachs.
Medical experts, and Terri Yerman,
know that's not true.
Terri is not Jewish, but her ex-
husband Ronald is. When they mar-
ried in 1969, there was no indication
of Tay-Sachs in his family and, they
thought, no reason to worry about
hers. Their daughter Andrea was
born in 1972 while the couple was liv-
ing in Toledo. .
When Andrea was nine months of
age, Terri began to notice problems.
The baby wasn't focusing, sitting
22 FRIDAY, JANUARY 13, 1989
Several Detroiters have endured the
agony of bearing a doomed child.
upright very well or crawling. Terri
was concerned, but doctors had told
her in earlier exams that Andrea was
just developing slowly.
Andrea's condition was finally
diagnosed in Cleveland. Ron mention-
ed to an opthamologist that the baby
seemed to be having vision problems.
The doctor, looking into Andrea's eyes,
was startled to find something he had
never seen in 30 years of practice —
cherry colored red spots on the retinas
which are a strong indication of Tay-
Sachs disease.
Subsequent tests at Cleveland
Clinic confirmed the diagnosis and
the Yermans' worst fears — their
daughter had an incurable and dead-
ly disease.
The awful truth sank in as the
Yermans examined their options. As
with most Tay-Sachs cases, the doc-
tors recommended institutionalizing
Andrea, but the Yermans decided to
keep the baby at home. "I felt I could
give her a lot more attention and love
at home than in a hospital!' says
Terri.
By this time, the Yermans had
moved to Ann Arbor. Even though
Terri had some nursing background,
she admits it was rough to care for her
own terminally-ill child. Andrea was
being fed intravenously through a
tube down her nose. She had lost her
ability to swallow and had to be suc-
tioned regularly — every night, every
hour.
The worst part, says Terri, was
watching Andrea's senses dwindle —
her hearing and eyesight.
"When she first went blind, it was
terrible. I remember crying . . . and
thinking 'I'm going to have a blind
daughter! And then I thought, 'Going
blind would be simple compared to
what's going to happen! We used to
hold her and touch her and hoped she
sensed we were there . . . I was almost
grateful when she lost her hearing.
She had hyperacusis (ultra-sensitive
hearing). Even rattling a teacup
would make her jump!"
Andrea's long, slow deterioration
took a heavy toll on Terri and her hus-
band, who traveled much of the time.
There were arguments, some about
euthanasia, because Ron couldn't
stand to see Andrea suffer. "It was so
difficult. There were times he wanted
to overdose Andrea. In my mind, I
couldn't accept that. After she died,
he thanked me for not allowing him
to do it!'
There were the usual feelings —
the guilt, the blaming, the anger at
why this had to happen to them. Terri
would look at friends' children — hap-
py, healthy and developing normally
— and feel pangs of envy while her
daughter was slipping away.
Terri sought counseling as a way
to channel her anguish and adjust.
She says Ron's family accepted and
dealt with the situation, but her own
could not believe that she had con-
tributed to Andrea's illness. In fact,
when Terri begged family members to
get tested for Tay-Sachs, many did
not.
When Andrea was 2 years old, the
Yermans decided they would try to
have another child, knowing full well
that this baby could also be affected.
While pregnant, Terri underwent am-
niocentesis and wrestled with the
question of possibly having to abort
the fetus. In spite of what they had
been through, she doubted she could
do it.
Finally the word came: she was
carrying a normal, healthy baby girl.
Daughter Joy was born in July 1975.
The Yermans had considered adop-
tion, but were told they would have to
institutionalize Andrea first, and they
would not.
Joy was 18 months old when An-
drea died of cardiac arrest in January
1976. A month before, a weary Terri
had stood beside Andrea's bed, look-