Down Syndrome: Caring for a Baby Who Has Down Syndrome

Down syndrome is a genetic disorder that causes mental retardation and physical defects. It is caused by the presence of an extra copy of chromosome number 21. This condition is called trisomy 21.

Tests (such as amniocentesis and chorionic villus sampling) can be done before birth to find out if a baby has Down syndrome. Tissue and fluid in the womb around the baby can be checked for the extra chromosome. After birth, if the baby has any of the physical signs or birth defects of Down syndrome, the baby's blood can be tested to check for the extra chromosome.

Some of the most common physical signs of Down syndrome are upward slanting eyes, flattened facial features, ears that are small or unusually shaped, broad hands with short fingers and curved "pinky" fingers and a small head. None of these physical differences will cause health problems.

Some birth defects associated with Down syndrome cause more serious health problems. Babies who have Down syndrome often have poor muscle tone or problems with their heart, stomach or eyes. Intelligence ranges from low normal to very retarded (slow to learn), which can make learning and development more difficult.

Just like any other newborn, your baby will need to be fed, dressed, diapered, cuddled, held, talked to, played with and loved. However, your baby may have some health problems that will require some extra care.

Some babies who have Down syndrome have poor muscle tone. This makes it harder for them to learn to roll over, to sit up and to walk. Physical therapy can help with these problems.

There's a chance that your baby may have some kind of heart defect (about half of babies who have Down syndrome also have a heart problem). An ultrasound exam of your baby's heart will show any defects. Surgery may be necessary to fix the heart problems associated with Down syndrome.

Some babies who have Down syndrome have problems swallowing, or they may have blockages in their stomach or intestines. Surgery may be necessary to fix these problems. Once they are fixed, they usually cause no further harm.

Some babies have eye problems, like cataracts (cloudy lenses) or crossed eyes. Corrective lenses or surgery may be necessary to fix these problems.

Children who have Down syndrome may have colds, ear infections and sinus infections more often than other children. They are more likely to have thyroid problems, hearing loss, seizures and problems in their bones and joints. It's also common for these children to be late in teething.

In many important ways, children who have Down syndrome are very much the same as other children. They have the same moods and emotions, and they like to learn new things, to play and enjoy life. You can help your child by providing as many chances as possible for him or her to do these things. Read to your child and play with him or her, just as you would any other child. Help your child to have positive experiences with new people and places.

Early intervention programs can help children who have Down syndrome develop motor, language and social skills that will give them the best chance of success.

Intelligence ranges from low normal to very retarded (slow to learn) in people who have Down syndrome. If you can keep your child physically healthy and provide the therapy or treatment for his or her impairments, he or she will be better able to learn. At birth, it isn't possible to tell how smart a baby who has Down syndrome will be. With therapy, many adults who have Down syndrome have jobs and live independently.

You may need to give your baby medicine for a heart defect or some other medical problem. Your doctor will probably want to check your baby more often to be sure that he or she is growing well and isn't developing problems from birth defects.

Your baby may need to have physical therapy every week to help with building up muscle tone and coordination. Later on, speech therapy and occupational therapy (to help with issues such as language skills, hand-eye coordination and social skills) may be helpful for your child.

You may feel disappointment, grief, anger, frustration, fear and anxiety about the future. These feelings are all normal. Talking to other parents of children who have Down syndrome can be helpful, because they know how you are feeling. You can also talk to your family doctor or visit a support group where you can share your feelings and get additional information.

Breastfeeding is good for all babies, including babies who have Down syndrome. It should be noted that your baby may be a little slow in learning how to breastfeed, but it is possible.

You may find it helpful to talk with your doctor, a nurse or a therapist with special training when your baby is learning to breastfeed. Other mothers who have breastfed babies who had Down syndrome can also give you helpful advice. Your doctor can help you find other mothers to talk to.

In most cases, for every 100 couples who have another baby, 1 will have another baby with Down syndrome. If you're planning on having more children, talk with your doctor. He or she can help you decide whether to seek genetic counseling.

Several support groups, organizations and community resources exist to help children who have Down syndrome and their parents, siblings and other family members.