If you are preparing to have a child with Down syndrome or you have an infant with Down syndrome, you are likely adjusting to a reality you had not envisioned. Discuss your fears with close friends and family. As you get to know your new baby and watch him or her grow and learn, you will find that parenting a child with Down syndrome can be as joyous, rewarding -- and of course challenging -- as parenting any child. It will help to learn all you can about your child's condition so you will have the tools you need to understand and care for a child with Down syndrome.
What is Down Syndrome?
Down syndrome is a chromosomal condition that leads to a combination of birth abnormalities. The condition normally occurs when a fertilized egg has an extra chromosome. In normal conditions, a fertilized egg has 23 pairs of chromosomes. A child with Down syndrome has an extra copy of chromosome 21 (the medical term for Down syndrome is Trisomy 21). A child with Down syndrome typically is born with mental and physical symptoms that range from mild to severe. Generally, his or her physical and cognitive development will be delayed.
Down syndrome is among the most common genetic birth abnormalities. According to the National Down Syndrome Society, 1 in 691 babies are born with Down syndrome in the United States.
Signs and Symptoms of a Child With Down Syndrome
Common physical signs of a child with Down syndrome include:
- Upward slanting eyes.
- A flat face.
- Abnormally shaped ears.
- A short neck.
- Poor muscle tone and loose ligaments.
Most people with Down syndrome have some degree of learning disability that ranges from mild to moderate. Early intervention has been shown to boost a child's potential for development.
Other Common Health Issues for a Child With Down Syndrome
Down syndrome is linked with a host of medical problems, some of which can be serious. You should make sure your child with Down syndrome gets regular medical care. The potential problems include:
- Heart defects: About half of all babies with Down syndrome have heart problems, so a pediatric cardiologist should examine your newborn.
- Intestinal problems.
- Hearing or vision problems.
- Increased risk for leukemia or thyroid problems.
- Celiac disease.
- Greater susceptibility to minor health problems, such as colds, ear infections, and bronchitis.
Who is at Risk for Having a Child With Down Syndrome?
These are the most common factors that increase your risk for having a child with Down syndrome:
- Maternal age. Women who become pregnant later in life are at higher risk than younger woman for having a child with Down syndrome. In fact, the chances of having a child with Down syndrome increases from 1 in 1,250 for a 25-year-old woman, to 1 in 100 for a woman age 40. Although a woman of any age can have a child with Down syndrome, women older than 35 are considered to be at higher risk.
- Previous child with Down syndrome. If you have already had a child with Down syndrome, you are at increased risk of having another.
- Medical history. If you or your partner has a history of chromosomal abnormalities, you are also at increased risk.
All pregnant women of any age should be given the choice to have antenatal screening for Down syndrome. If the risk of the baby having an abnormality is calculated to be more than 1 in 250, a diagnostic test will be offered.
Diagnostic tests for Down syndrome and certain other birth abnormalities include chorionic villus sampling (CVS) and amniocentesis. These tests are 98 to 99 percent accurate in detecting a child with Down syndrome in a pregnant woman.
Early Intervention and Education for a Child With Down Syndrome
Early intervention programs that integrate special education and speech and physical therapy has been shown to boost the developmental potential of children with Down syndrome.
Most children with Down syndrome start at mainstream schools, but some parents will choose special schools or schools that have programs tailored for their child. As a parent of a child with Down syndrome, you can be proactive to ensure that your child gets the support and education he needs and to which he is legally entitled.
Although the skills and abilities of people with Down syndrome vary greatly, many grow up to live independently or in supportive group environments, and to hold down jobs.
Support for Parents of a Child With Down Syndrome
Having a child with Down syndrome can be a frightening and lonely experience, especially at first. There are many resources available, so be sure to reach out and get the support you need:
- Learn all you can. Read about Down syndrome in other sections of this web site and other online sources. Ask questions of the child's pediatrician.
- Build a support system. Seek out local groups and parent network organizations for families that have a child with Down syndrome. Ask your doctor or child developmental specialist for referrals. Join an online chat group for parents of a child with Down syndrome.
- Take care of yourself. Don't forget to care for the caregiver -- yourself. You won't do anyone any good if you get burned out. Take regular time to do the things you love, or have a night out with friends.
- Take care of your relationships. Try to make regular adult time for you and your partner. Find a babysitter you like and trust. And don't forget your other children: make sure to keep up with their activities and try to have special one-to-one time with them as often as possible.
- Get help. If you and your partner are consistently burned out or depressed, or if you are not getting along, seek help. Having a disabled child can be extremely stressful, and can put your relationship at risk. Your health care provider can refer you to a qualified individual, family, or couple's therapist.