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A New Baby With Down Syndrome

Expert Pediatrics Q&A

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Updated October 28, 2012

A toddler with Down syndrome.

A toddler with Down syndrome.

Photo (c) Tomasz Markowski
Q. Our newborn baby was just sent home from the NICU, having some complications that were discovered right after he was born, including a small hole in his heart, jaundice, and Down syndrome. Since my wife is older, she so was thought to be more at risk for having a baby with Down syndrome. However, tests were negative during her pregnancy, although we didn't have an amniocentesis or chorionic villus sampling.

He seems to be doing fine and we are scheduled to see our pediatrician tomorrow, but I was just wondering what we can expect... Tom, Dallas, Texas

A. Most pregnant women are offered what is called a 'triple screen' test or some combination of blood testing and ultrasound to see if their baby is at risk for having Down syndrome and so are aware of the diagnosis before the baby is born. Unfortunately, this group of tests is not 100 percent accurate, so some higher risk mothers, especially mothers who are over 35 who are at higher risk for having a baby with Down syndrome, have additional testing, such as amniocentesis or chorionic villus sampling. Although much more accurate, these two tests can sometimes cause a miscarriage, although the risk is small, so doctors must discuss the risks and benefits of testing with parents-to-be.

If amniocentesis or chorionic villus sampling is not done, the diagnosis of Down syndrome is sometimes not made until the baby is born.

Down Syndrome

Down syndrome or Trisomy 21 is a genetic disorder that is caused by a baby having an extra copy of chromosome 21. This can cause characteristic facial features, mental retardation, which varies from mild or moderate to severe, and decreased muscle tone. Children with Down syndrome may also be born with heart and intestinal problems and they are at increased risk for developing leukemia, obstructive sleep apnea, hearing loss, thyroid problems, ear infections, and vision problems.

The American Academy of Pediatrics has developed a set of Health Supervision Guidelines, including a special growth chart that should be used for children that have Down syndrome, that can help your pediatrician monitor your baby for all of the above problems.

Newborns with Down Syndrome

Newborns with Down syndrome generally do well, especially if they don't have an association heart defect that is itself causing a problem. Babies with Down syndrome may also have feeding problems, but otherwise, new parents of a baby with Down syndrome will mostly need information and support at this time.

In addition to your pediatrician, you might find help from a local Down syndrome support group and a Down syndrome clinic at your nearest Children's Hospital.

These resources may also be helpful for new parents of a baby with Down syndrome:



Sources:

Down syndrome births in the United States from 1989 to 2001. Egan JF - Am J Obstet Gynecol - 01-SEP-2004; 191(3): 1044-8.

Behrman: Nelson Textbook of Pediatrics, 17th ed.

American Academy of Pediatrics Policy Statements. Health Supervision for Children With Down Syndrome. Pediatrics 2001 107: 442-449.

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