Welcoming babies with Down syndrome

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.

Are there different varieties of the disorder?

There are three major types of Down syndrome. Your baby is most likely to have trisomy 21. That means there's extra genetic material on the 21st pair of chromosomes resulting from an anomaly in cell division during development of the egg or sperm or during fertilization. About 95 percent of people with DS have trisomy 21.

About 4 percent have translocation, in which part of chromosome 21 breaks off and attaches to another chromosome.

About 1 percent have mosaicism, which means there's a mix of normal and abnormal cells. In mosaic Down syndrome, the abnormal cells have an extra copy of chromosome 21.

What will life be like for a child growing up with Down syndrome?

Your child will have more opportunities than a child born with DS even five years ago. Young people with DS have shown they can excel in areas never thought possible. But they need the understanding and support of their communities so they can integrate into mainstream programs, and doors continue to open.

Thousands of young people with DS across the country quietly live their lives and transform their communities just by being there. They have dreams and the determination to reach their goals.

They learn in regular classrooms in their neighborhood schools with the children who will one day be their co-workers and neighbors. Young adults hold diverse and meaningful jobs, maintain their own households, and make significant contributions to their communities every day.

Should I do anything different to prepare for my baby's birth?

There's a higher chance your child could have a heart problem or another birth defect, so you may want to deliver in a hospital rather than at home. Try to get plenty of rest – childbirth is hard work.

Also, you're allowed to feel however you feel, and so are others who love you and your baby. Many of your emotions stem from a new life coming into your family.

You deserve congratulations and wonderful gifts. Have the good cooks among your family and friends bring over their best meals. Above all, take time to welcome and enjoy your baby – they grow up fast.

Where can I go for more information?

Two national organizations will send free information about Down syndrome to you and other family members. They have yearly conferences, newsletters, and lists of local parent groups you may wish to join.

For local resources and information contact:

• National Down Syndrome SocietyOpens a new window 
• National Down Syndrome CongressOpens a new window 

Give your family, friends, and neighbors some time to learn about Down syndrome, reminding them if necessary that it's just a small part of who your child is and will become.