Advice for New Parents

What is Appropriate Medical Care for a Newborn with Down Syndrome?

By Laura Cifra-Bean, M.D., Co-Chair, NDSC Professional Advisory Committee

All newborn care should begin with a thorough physical exam. If the clinician suspects the infant has Down syndrome, then a definitive diagnosis from a blood test to study the chromosomes is necessary. All babies who might have DS, need a cardiac evaluation that includes an echocardiogram. There is a high rate of heart defects even if a heart murmur is not heard.

Pay special attention to feeding, weight loss and jaundice. Since abnormalities can occur, a blood count is needed. The routine state newborn screen will test for thyroid function.

Perform a hearing test soon after birth and have an ophthalmologist examine the baby’s eyes before six months of age.

Give parents information about local support groups, up-to-date references for information and a referral for early intervention services.

Things to do when you learn your baby has Down syndrome…but you don’t need to do them all today!

Adapted from the Down Syndrome Association of Minnesota (www.dsamn.org)

  • Enjoy your baby. Play with her, read to her, rock her, cuddle with her, talk to her, gaze at her when she’s sleeping, figure out what she likes – and do it often!
  • Connect with other parents of children with Down syndrome. Look for a Parent Group in your area. Call the NDSC at 800-232-6372 to find the organization nearest to you.
  • Learn more about Down syndrome. You’ve probably got lots of questions about your child’s diagnosis and what it means for the future. Much information is available on the internet; some through local bookstores and libraries. Check out the copyright dates, though. Anything published before 1990, probably is out-of-date and may not be very helpful. Woodbine House Publishing (www.woodbinehouse.com) is a wonderful resource on Down syndrome, including books on developing gross motor skills, developing fine motor skills, developing communication skills, teaching reading and math, and medical and surgical concerns. There are also helpful DVD’s and books for children.
  • Find out about early intervention programs in your area. Every state has an Early Intervention Program for babies, from birth until the third birthday. A good source for locating your state’s program is the NICHCY website: www.nichcy.org. Click on State Resources and look for Programs for Infants and Toddlers with Disabilities: Ages Birth through 2. This will help you locate the office that serves your county or area.
  • Take care of yourself: While it’s probably the last thing on your “to do” list right now, you can better care for your child if you care for yourself, too. Spend time nurturing the relationships with your partner, other family members and friends. Accept help when it’s offered.
  • Connect with a health care provider familiar with Down syndrome and its unique medical issues. You may want to supplement care provided by your current doctor or nurse practitioner or you may be looking for a new provider. Some cities are lucky enough to have a Down Syndrome Clinic, specializing in the care of babies with Down syndrome. In other cities, you may want to look for a developmental pediatrician. Many HMOs and large clinic systems have a developmental pediatrician on staff. Providers who see lots of children with Down syndrome can be a wealth of information for you and your primary physician.
  • Investigate county resources. Check your local phonebook and look for a county department name such as Human Services, Community Services or Developmental Disabilities. Your county also may have a Web site where you can find out how to connect with a case manager. A case manager should be able to help you find services that may benefit your child and your family. A case manager can help you connect with a school district, find available community services and tell you about financial resources you may qualify to receive. Families often use these services when their children are older. It’s helpful to have connections in place to use when you need them.
  • Don’t be afraid to grieve. Grieving is normal and people express it differently – sadness, tears, anger, fear, depression or withdrawal. It’s okay to cry. The baby you have may not be the baby of your dreams. Many parents of children with Down syndrome feel this way. Most also learn that – eventually – they dream new dreams.
  • Remember to enjoy your baby. Marvel at his fingers and toes, stroke the hair (or fuzz!) on his head, read Goodnight Moon again and again, watch him watching you, sing to him and give him one or two – or more! – hugs and kisses.