This content was developed by the University Centers for Excellence in Developmental Disabilities in CA (USC), MA (UMass Boston), IA (U of IA), KY (U of KY) and supported in part by the National Center on Birth Defects and Developmental Disabilities (NCBDDD) of the Center for Disease Control and Prevention through a cooperative agreement with Association of University Centers on Disabilities (AUCD). The opinions expressed are strictly those of the authors and do not necessarily reflect the opinions of the supporting organizations.
Welcoming your son or daughter into the world will bring joy to you and your family. Your baby will be just like other babies in most ways. He or she will play, enjoy life and like to learn new things. Like any parent, you may have some questions about your baby. This brochure is a starting point for learning about Down syndrome, resources and support groups. All babies are different. It is important to talk with your baby's doctor to learn what to do if your baby has any of the above health concerns. Congratulations!
Your Baby and Down Syndrome
I thought my pregnancy was normal. What happened?
What if I want to have another baby?
Where do I begin to help my baby?
What will the future hold for my baby with Down syndrome?
How might Down syndrome affect my baby’s health?
Where can I find more information about Down syndrome?
How can I find other parents of children with Down syndrome?
See Also:
Your Baby and Down Syndrome
What is Down syndrome?
Down syndrome is the most common genetic disorder. Babies with Down syndrome are born with 3 copies of chromosome 21, instead of the usual 2. The exact cause of this extra chromosome is unknown. Down syndrome causes developmental problems. It can also affect the way he or she looks. However, the following physical differences will not affect their health:
- Skin folds at the inner corners of the eyes
- Flat nose bridge
- Low, small or unusually shaped ears
- Small head
I thought my pregnancy was normal. What happened?
Mothers over age 35 have a higher chance of having a baby with Down syndrome. (It is important to note that the overall number of babies who have Down syndrome are born to women under age 35, because women in this age group are having more babies than women over age 35.) The risk of Down syndrome is higher because as a woman ages, so do her eggs, which then have a higher chance of having abnormal chromosomes. Specific medical tests (such as amniocentesis and chorionic villus sampling) are available during pregnancy to diagnose Down syndrome. However, without these tests, it is impossible to be sure if an unborn baby has the disease.
What if I want to have another baby?
If you are planning to have more children, ask your doctor about your chances for having another child with Down syndrome. You may be referred to a genetic counselor.
Where do I begin to help my baby?
- Love and enjoy your new baby.
- Stay in touch with your baby’s doctor.
- Seek support from parent groups.
- Follow-up with recommended medical specialists.
- Find disability-related resources in your state.
What will the future hold for my baby with Down syndrome?
People with Down syndrome have some level of intellectual disability, which can be anywhere from mild to severe. Most are somewhere in between. Therapy for speech, language and behavior issues are available for children with Down syndrome. No one can look at any infant and know how intelligent, successful or independent he or she will be in the future.
How might Down syndrome affect my baby’s health?
Today, people with Down syndrome are achieving more with advances in health care and increased opportunities in education. With support, many can:
- Move out of the family home
- Take care of themselves
- Hold regular jobs
- Participate in leisure activities
- Live rich and full lives
Babies with Down syndrome might be affected by any of the following health conditions:
- Difficulty breastfeeding
- Poor muscle tone
- Heart defects
- Digestive or feeding problems
- Ear, nose or throat issues
- Vision problems
- Thyroid disease
- Slow or delayed growth and development
- Dental problems
Where can I find more information about Down syndrome?
All babies are different. It is important to talk with your baby’s doctor to learn what to do if your baby has any of the above health concerns.
Ask your doctor about important health screenings at different ages. Clinical guidelines can be found at the following medical professional association websites:
- American Academy of Family Physicians www.aafp.org
- American Academy of Pediatrics www.aap.org
The following organizations can answer many of your questions, offer support and refer you to resources:
- National Down Syndrome Society: (NDSS) 800-221-4602 or www.ndss.org
- National Down Syndrome Congress: (NDSC) 800-232-6372 or www.ndsccenter.org
Many parents recommend the NDSS Changing Lives Program (contact NDSS). Health professionals often mention the book Babies with Down Syndrome (by Karen Stray-Gundersen) to new parents.
How can I find other parents of children with Down syndrome?
Many parents are happy to share their experiences and can:
- Answer questions
- Explain medical language, services and how specialists can help
- Find resources (financial assistance, early intervention, health, social services, etc.)
To find parent support groups in your area, contact:
- NDSS at 800-221-4602 or www.ndss.org
- Down Syndrome Newsgroup at www.downsyndrome.com
More Information
Special Conditions in Children
- Cerebral Palsy in Children
- Amblyopia
- Birth Defects
- Cleft Lip and Palate
- Caring for a Newborn with Oral Clefting
- Congenital Adrenal Hyperplasia
- Down Syndrome: Caring for a Baby Who Has Down Syndrome
- Down Syndrome and Your Unborn Baby
- Esophageal Atresia and Tracheoesophageal Fistula
- If Your Child Has a Heart Defect
- Heart Murmurs
- Henoch-Schönlein Purpura
- Hirschsprung's Disease
- Intestinal Malrotation
- Intussusception
- Mental Retardation
- Sickle Cell Disease in Children
- Strabismus (Cross-Eyes)
- Transient Tachypnea of the Newborn
- Tuberous Sclerosis
- Undescended Testicles
Source
This content was developed by the University Centers for Excellence in Developmental Disabilities in CA (USC), MA (UMass Boston), IA (U of IA), KY (U of KY) and supported in part by the National Center on Birth Defects and Developmental Disabilities (NCBDDD) of the Center for Disease Control and Prevention through a cooperative agreement with Association of University Centers on Disabilities (AUCD). The opinions expressed are strictly those of the authors and do not necessarily reflect the opinions of the supporting organizations.
Created: 01/06