11. Down Syndrome
Nearly every pregnant woman receives
information on Down syndrome. When you’re older, you may be offered
various tests to determine whether your fetus is affected by the
Down syndrome was given its name by British physician J. Langdon Down in the 19th
century. He found babies born with the syndrome have an extra
chromosome 21. Symptoms of the condition are present to some degree in
all babies born with the syndrome. These symptoms include mental
retardation, a sloping forehead, short, broad hands with a single palm
crease, a flat nose or absent nose bridge, low-set ears and a dwarfed
Through medical research, we know that
some women are at higher risk of giving birth to a child with Down
syndrome. Women with increased risk include older women, those who have
previously given birth to a child with Down syndrome and those who have
Down syndrome themselves.
The statistical risk
of delivering a baby with Down syndrome increases with age. However,
there are some positive aspects to these statistics. If you’re 45, you
have a 97% chance of not having a baby with Down syndrome. If you’re 49, you have a 92% chance of delivering a child without Down syndrome.
Your risk of delivering a child with Down syndrome, depending on your age, is shown below:
•at age 25, the risk is 1 in 1300 births
•at 30, 1 in 965 births
•at 35, 1 in 365 births
•at 40, 1 in 109 births
•at 45, 1 in 32 births
•at 49, 1 in 12 births
Tests to help detect Down syndrome
include amniocentesis, chorionic villus sampling, alpha-fetoprotein
test, quad-screen test, triple-screen test, instant risk assessment,
nuchal translucency screening and ultrasound. Discuss them with your
healthcare provider for further information.
Diagnosing Down Syndrome before Birth
Many tests can help diagnose Down
syndrome in a developing fetus. They’re not offered to every woman;
they are usually offered only to women at high risk, those 35 and older
carrying one baby and those over 32 carrying multiple fetuses. However,
the American College of Obstetricians and Gynecologists (ACOG) now
recommends that all pregnant women be offered Down syndrome
testing. Their recommendation is based on the fact that the majority of
babies born with Down syndrome are born to younger women. Some women at
higher risk choose not to take the tests because they wouldn’t
terminate their pregnancy even if the child had Down syndrome.
If you are concerned about Down syndrome,
have one or more of the tests listed below. You might have the test if
you and your partner (and the rest of the family) want to be mentally
and emotionally prepared for this special child. You might want the
test if you would consider terminating your pregnancy.
Many families say they would welcome any
child into their lives, no matter what his or her condition. If this is
your attitude, enjoy your pregnancy and don’t worry about it.
Down Syndrome Children Are Special
People want to know if there are any positive aspects of giving birth to a child with Down syndrome. The answer is, “Yes!”
A few years ago, I
delivered a Down syndrome child for Anne, a patient in her early 40s.
We did an amniocentesis early in the pregnancy and knew to expect Down
syndrome. A year later, she reported to me the joy and love this
special child had brought the entire family. Anne told me, “I don’t
know what our family would have been like without the blessing of this
very special child. We cherish her.”
As a society, we have come to realize
children born with Down syndrome bring a special, valuable quality of
life into our world. Down children are well known for the love and the
joy they bring to their families and friends. They remind us of the
pleasure in accomplishing simple tasks when they learn new skills. They
embody the concept of unconditional love, and we can often learn how to
cope and to grow as we interact with them.
Rearing a child with Down syndrome can be
challenging, but many who have faced this challenge are positive about
the impact these special children have in their lives. If you have a
child with Down syndrome, you may work harder for every small
advancement in your child’s life, but your rewards will be great. You
may experience frustration and feelings of helplessness at times, but
every parent has these feelings at some time.
Often we only hear about the negative
side of raising a child with Down syndrome. We hear about the
worst-case scenario and never hear about the other side of the issue.
All women carrying a child with Down syndrome need to know the
The average IQ for a child with Down
syndrome is between 60 and 70. Most are in the low, mildly retarded
range. Some children with Down syndrome have normal IQs. IQ scores for
those with Down syndrome have risen steadily in the last 100 years.
Less than 5% of those with Down syndrome are severely to profoundly
The reading levels of Down syndrome
children who are in special-education programs in public schools range
from kindergarten to twelfth grade. The average is about third grade.
Nearly 90% of those with Down syndrome
are employable as adults. Most adults with Down syndrome are capable of
living independently or in group homes. A person with Down syndrome who
survives infancy has a life expectancy of 55 years or more.
Many families are on
waiting lists to adopt a child with Down syndrome. A child with Down
syndrome usually makes a positive impact on a family.
It’s Your Decision
If you’re carrying a child with Down
syndrome, you and your partner have many things to consider. Many
couples welcome the birth of this special child into their families.
Others elect to terminate the pregnancy.
Whatever decision you make, it must be your
decision. Do not allow yourself or your partner to be pressured into
making any decision without your full understanding of the situation.
Seek information. Talk to parents of children with Down syndrome. Make
your decision based on the feelings you and your partner share. There
are positive and negative aspects to consider, as there are with any
child. Whatever decision you make may be difficult; involve your
healthcare team and your partner in the process.