If you’re welcoming a new baby with Down syndrome (DS) into your family, you probably have many questions and concerns. One of my two children was born with the disorder, and I’ve written this information keeping in mind my own diverse experiences.
What is Down syndrome?
DS is a chromosomal anomaly that occurs in about 1 out every 700 births. The risk of having a baby with the condition is greater in women who are older than 35. But the majority of babies with DS are born to mothers younger than 35 simply because younger women are more likely to have babies than older women.
In DS, an inexplicable error in cell development results in 47 chromosomes (rather than the usual 46), and the extra gene material slightly changes the orderly development of the body and brain. About 6,000 babies with Down syndrome are born in the United States every year, and the national population of people with DS is estimated to be 400,000.
Babies with DS and typically developing infants are more alike than they are different. And as they grow up, you’ll find there is great diversity in terms of personality, learning style, intelligence, appearance, compliance, humor, compassion, congeniality, and attitude.
What are the characteristics of Down syndrome?
Children with DS resemble their family members more than they do one another. They also have a full range of emotions and attitudes, are creative and imaginative, and grow up to live independent lives needing varying degrees of support and accommodations.
Down syndrome will not be the most interesting thing about your son or daughter. Remember that raising any child fills your life with unimaginable delight and difficulties. We can no longer predict how far our children will go.
Children with DS benefit from the same care, attention, and inclusion in community life that help every child grow. As with all children, quality education in school or at home is important for developing strong academic skills.
On standard intelligence tests, children with Down syndrome most often score in the mild to moderate range of intellectual disabilities. But these tests don’t measure many important areas of intelligence, and you’ll be surprised by your child’s memory, insight, creativity, and cleverness. Unfortunately, the high rate of learning disabilities in students with Down syndrome may mask a range of abilities and talents.
Although children with DS often need extensive health evaluations and other professional interventions from an early age, it’s important to keep in mind that every child deserves to be surrounded by people who love, respect, and admire him.
Individuals with DS may have certain physical attributes including:
Almond-shaped eyes with striking Brushfield spots (small, white, crescent-shaped markings) on the irises
Single palmar crease on one or both hands
Small head or features (such as hands, fingers, mouth, and ears)
A high rate (35 to 50 percent) of congenital heart defects – your child should have an echocardiogram within the first two weeks of life.
National organizations for individuals with Down syndrome provide medical checklists that you may want to pass on to your child’s doctor.