Caring for a Baby Who Has Down Syndrome

Down syndrome is a genetic condition. A person who has Down syndrome is born with an extra copy of the 21st chromosome. It is detected at birth. It also can be detected during a pregnancy with genetic testing. Down syndrome causes some physical and intellectual disabilities. Most of the time, it’s at a moderate level. If you have a baby with Down syndrome, you will need to feed, dress, diaper, cuddle, hold, talk to, play with, and love him or her like any infant.

Path to improved development

In many important ways, children who have Down syndrome are very much the same as other children. They have the same moods and emotions, they like to learn new things, play, and enjoy life. You can help your child grow and develop 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.

Every baby born with Down syndrome is different. As your new baby grows, you will need to pay special attention to his or her physical and intellectual development. Your baby also may have some health problems that require extra care. Not all babies born with Down syndrome have health problems. Not all babies will have the same health problems.

Physical health: Babies who are born with Down syndrome are more likely to have:

  • Feeding issues. Learning to suck a bottle or breastfeed may take your baby longer to learn. Breastfeeding is good for all babies, including babies who have Down syndrome. Your doctor, a nurse, a feeding therapist, or another mom who has a baby with Down syndrome can provides tips and special training
  • Heart defects. Some heart problems will require surgery within the first year. Other problems will correct themselves over time. If your baby has a heart problem, your doctor will refer you to a cardiologist. He or she will monitor your baby’s heart health until the problem is corrected.
  • Hearing issues. Some babies will have partial hearing loss. Babies who have Down syndrome have smaller Eustachian tubes (part of your inner ear). This causes fluid buildup. That can be relieved with tubes. Your doctor will surgically insert the tubes to relieve the fluid. Some babies have permanent nerve damage. This can cause permanent hearing loss. Hearing aids often help your child hear. Without treatment, the hearing loss can affect your baby’s speech development.
  • Vision problems. This might include cataracts or other eye issues requiring glasses.

Less likely health issues include:

  • intestinal blockage at birth requiring surgery
  • hip dislocation
  • thyroid disease
  • anemia (red blood cells can’t carry enough oxygen to the body) and iron deficiency (anemia where the red blood cells don’t have enough iron)
  • leukemia in infancy or early childhood.

Developmental milestones

Your baby will reach all the same infant and toddler milestones. However, it will take him or her a little longer. Early intervention physical and occupational therapy, as well as academic support can help children who have Down syndrome develop. This includes:

  • motor (crawling, walking, feeding, dressing, handwriting)
  • language (talking and vocabulary development)
  • social (turn-taking, sharing, eye , manners)
  • academic skills (early reading, counting).

The earlier you baby starts receiving therapy, the better he or she will develop and succeed in life.

Many towns and cities have support groups, organizations, and community resources to help parents who have children with Down syndrome. These resources also are helpful for grandparents, siblings, and other family members. Your doctor can tell you where to find these resources in your community.

Things to consider

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 before you become pregnant again.

When you first learn that your baby has Down syndrome, 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. They know how you are feeling. You also can talk to your family doctor or visit a support group where you can share your feelings and get additional information.

Questions to ask your doctor

  • Do babies who have Down syndrome have low muscle tone?
  • Will my baby learn to read?
  • Will my baby grow up to be independent?
  • How can I tell if I am sad about my baby’s diagnosis or if I’m suffering from post-partum depression?

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