Caring For A Baby With Down Syndrome

Down Syndrome: Caring for a Baby Who Has Down Syndrome

What is 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.

How is Down syndrome diagnosed?

Before birth, tests (such as amniocentesis and chorionic villus sampling) can check the tissue and fluid in the womb for the extra chromosome. After birth, if the baby has any of the physical signs or birth defects of Down syndrome, your doctor can test the baby's blood for the extra chromosome.

What are the physical signs and birth defects of Down syndrome?

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 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, intestines or eyes. Intelligence ranges from low normal to very retarded (slow to learn), which can make learning and development more difficult.

How will I take care of my baby who has Down syndrome?

Just like any other newborn, you will need to feed, dress, diaper, cuddle, hold, talk to, play with and love your baby. Your baby also may have some health problems that require extra care.

What are the health problems that might affect my baby?

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

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 intestines. Surgery may be necessary to fix these problems. Once they are fixed, they usually cause no further harm.

Some babies have eye problems, such as 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.

Will my child be able to do the same things as other children?

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, 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.

Will my child have learning problems?

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

What other special care will my baby need?

You may need to give your baby medicine. Your doctor will probably want to check your baby 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.

Can I breastfeed my baby?

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

When your baby is learning to breastfeed, you may find it helpful to talk with your doctor, a nurse or a therapist who has had special training. 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.

If I've had one baby with Down syndrome, am I at greater risk of having another?

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.

Since I learned my baby has Down syndrome, I've been confused and upset. What can I do?

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

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