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The good news about bad news
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Judy Siegel-Itzkovich, THE JERUSALEM POST May. 8, 2005
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Trying to avoid unpleasant circumstances is part of human nature. But
many hospital staffers - doctors, nurses, midwives and social workers -
have to overcome this natural tendency and put themselves in the
parents' shoes when a less-than-perfect baby is born.
About one in 10 newborns has some defect, from the mild and treatable
tongue cyst, cleft lip or club foot to severe heart or genital
malformations and neural tube disorders. Some 150 babies with Down
syndrome - whose abnormalities are among the most visible - are born in
this country each year, despite available screening programs during
pregnancy. Thus, joyful anticipation changing into concern and even
shock is not an unusual event in delivery rooms.
So how can it be that mothers who give birth to infants with serious
defects are often treated as if they had done something wrong? Why do
some delivery room staffers hastily whisk the baby away for examination
and treatment without saying Mazal tov! or giving even a word of
explanation to the dismayed and bewildered parents?
How can a nurse ask a woman who just gave birth to a Down syndrome baby
"Do you really want him?"- which is what a woman named Ahuva says she
heard when her 10th child, whom her family treats like "a prince," was
born with this disability?
The first baby with the syndrome was diagnosed in 1862 by Dr. John Down
of London. Such infants were then sent directly to orphanages and other
institutions, and at the beginning of the 20th century, their life
expectancy was only about 11 years. Today, with good care, they can
enjoy a near-normal lifespan and have great potential. According to
Yated founder Rivka Sneh, whose adult son has Down syndrome, half of all
Israeli Down babies were abandoned in the hospital a few decades ago,
but today it is almost unknown.
EDUCATING medical staffers around the country to cope with such crises
is a slow process, concedes Prof. David Bransky, chief of pediatrics at
Jerusalem's two Hadassah University Medical Centers. But the Hadassah
Medical Organization is making a significant effort. Not only has it
established a National Center for Down Syndrome children at its Mount
Scopus hospital, but it also recently hosted a first-ever symposium on
"The First Hours After the Birth of a Child With Special Needs."
Organized by Shalva (the Jerusalem-based Association for Mentally and
Physically Challenged Children in Israel), the event packed Schacht
Auditorium under the Mount Scopus medical center with mothers, nurses,
physicians, social workers, midwives and others interested in learning
more. Shalva, located in the capital's Har Nof quarter, was established
in 1990 by Kalman and Malki Samuels on the basis of their experience in
coping with their son Yossi (now 29), who became blind, deaf and acutely
hyperactive in a rare reaction to a routine vaccination.
The voluntary organization, which has received awards from the president
and the Jerusalem Municipality, runs an innovative early intervention
and mother's support program called "Me and My Mommy." This program, run
by a multi-disciplinary team of experts for 300 families, promotes
maximal bonding and interaction between mothers and babies who have Down
or other developmental syndromes.
Also among those involved in organizing the symposium was Kesher, a
voluntary organization established to provide ongoing emotional support
and practical information to families with children having special
needs.
Goldie Marans, a Shalva social worker, initiated the process of
improving the interaction at delivery between staffers and parents two
years ago. She met with social workers from two hospitals to try to
start the ball rolling.
"They were excited by the idea," she recalls, "but doctors from these
and other Jerusalem hospitals turned our initiative down. We could not
even get them to meet with us to discuss any topic. I then reached out
to other organizations that treat the same population. We did not
progress. But finally, when Hadassah opened the center for Down syndrome
children, we found our partner. When an infant with visible disabilities
such as Down syndrome is born, if the hospital staff do not act
properly, it can have a detrimental effect on bonding. Some conditions
require that the baby be whisked away for medical attention, but many do
not," says Marans. Shalva decided to hold the symposium since "over 70%
of the birth stories involving special babies that we hear are of the
problematic variety." She is glad it was a success.
Marans presented a 15-minute documentary it made from interviews with
three mothers of Down syndrome babies; it was aimed at raising the
sensitive subject for public discussion. Each mother described a
different birth experience. Ahuva told how she felt lonely in the
delivery room.
"Nobody hugged me. I felt degraded. Later, all the babies were brought
to their mothers for a feeding, but not mine. I had to go to the nursery
to see him. "Do you really want him???" the nurse there asked
incredulously. A hospital social worker called her "poor thing!" and
said she should feel free to cry. "But he is an enchanting child, and he
brings much light and joy into our family," Ahuva declared.
British-born Aviva, a secular woman, delivered a Down syndrome baby
after her first pregnancy. "We knew about it advance, but refused to
have an abortion. The medical staff regarded him as just a fetus, but we
saw him as a child. He is a child, not a syndrome!"
Raheli, whose Down baby was her seventh child, called on hospitals to
"give more information. Smile... broadcast serenity to the parents."
After the film showing, Marans said, "one young midwife came to me and
said: 'I heard things I have said in that movie, but this is the first
time I heard how a mom hears them. I have to change.' For her alone it
was worth having this conference," Marans declares. A young doctor also
came forward to express his frustration and said: "The midwife has a
relationship with the family that is built up in the hours before birth,
and when something goes wrong, I - a total stranger - am called to give
the difficult news. They have never seen me before, and this is what I
must do...."
PROF. SIMCHA YAGEL, head of the ultrasound unit at the obstetrics and
gynecology department of Hadassah Medical Center on Mount Scopus, used a
multimedia presentation to show how advanced 3-D ultrasound is not just
a "toy" - as used in the US for expectant parents to get a
natural-looking peek at their fetus - but a valuable medical tool to
diagnose disorders - and sometimes even treat them - while the baby is
still in the womb.
"Seeing such a real image of the fetus, even at 24 weeks, is not a
gimmick. It can strengthen the bond between the family and the baby,"
Yagel said. "With this technology, one can even decide whether the fetus
resembles the father or the mother. You can see expressions change in
seconds, can see a fetus's reaction to certain tastes, and even see
their eyes open at 26 weeks. But you can also pick out defects that
couldn't be detected in two-dimensional black-and-white ultrasounds."
Some 3-D scans, he said, lead to abortions if a fetus is found to have a
severe defect, but in most cases it helps prepare parents to cope
instead of being knocked over by the sudden shock. For example, he said,
a significant gap between the fetus's big toe and next toe is "sandal
gap" and may be a sign of Down syndrome. When a medical team knows that
a fetal heart is seriously malformed, they can be prepared to perform a
lifesaving operation at birth.
Hadassah-Mount Scopus social worker Dvora Netzer describes the trauma of
some parents who refuse to accept their infant's disability after nine
months of dreaming of a perfect child.
"I have seen mothers refuse even to look at the baby, saying they don't
want him because they already have two healthy kids." The delivery room
team have been trained to calm such mothers down, leave the couple a
lone for 15 minutes and then come back and explain that a number of
tests have to be conducted to corroborate an uncertain diagnosis.
"We should say 'Congratulations!' We must be open but careful, as the
family can be destroyed. Parents have the right to know as quickly as
possible and to express their anger over what is for many the hardest
day in their lives. But in many cases, dealing with it properly can have
a beneficial effect on the whole family."
Prof. Michael Kaplan, chief of the neonatal department at Jerusalem's
Shaare Zedek Medical Center, noted that of the 10,000 annual deliveries
at his hospital, 20 to 25 will be Down syndrome babies. Because the
hospital is a favorite among haredi and national religious couples (who
may avoid prenatal screening, oppose abortions for religious reasons and
continue to have babies in their 40s), the Down syndrome rate is higher
there than in most others, Kaplan said.
"There are many haredi women who work as special education teachers, so
they are already familiar with disability and usually very anxious about
having a Down syndrome baby.
"The first 72 hours are critical. I don't know if there is a right or
wrong way to tell the parents. Each case is different. There is no
painless way, but our approach is to avoid hysteria. Sometimes, a
newborn has facial swelling, and is not really Down." Besides a genetic
test to confirm a diagnosis, short fingers, eye placement, forehead size
and excess skin on the nape of the neck are symptoms of the syndrome.
"Later, when we are sure, we have an interdisciplinary team discuss the
implications and emphasize how to bring the most potential out of Down
syndrome babies," Kaplan added.
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