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Learning that your new baby has Down syndrome can be a bit scary and even overwhelming. You may feel that your baby is very different from the baby you expected, but really, your baby is not so different after all. Your baby has the same needs as any other baby-warmth, safety, feeding, diaper changes, well child checkups, and love.
As you learn about Down syndrome, you may wonder what to expect. People with Down syndrome usually have low muscle tone, which may make your baby feel a bit floppy to you. Also, people with Down syndrome usually learn more slowly than others. These differences may mean that your baby will take longer to learn to roll over, sit, walk, and speak. It is important to remember that your baby can and will learn; it will just take a bit more time and practice. Do not limit your hopes or expectations. With time, your baby's talents and interests will show. You can help with learning by spending time together, making eye contact, touching, holding, talking, and singing to your baby.
You and your child can receive added help with development through an early intervention (EI) program. Early intervention services provide extra help to children who have developmental challenges. For your child, EI may include physical therapy or speech assistance, among other possibilities. You may have met someone to help with this process while still at the hospital or your child's primary care provider may start this referral. The agency responsible for providing EI varies on the basis of where you live, so to learn whom you can contact, check with your state's division of developmental disabilities or department of education.
Your baby will need the same well child checkups and immunizations as all babies. Having Down syndrome does mean that your baby may have some extra health issues and need more checkups to stay healthy. If health concerns are identified while your baby is still in the nursery, the hospital staff will help you set up any special appointments that may be needed. All babies with Down syndrome need to have their hearts and hearing checked, even if there are no signs of heart or hearing problems. This may begin at the hospital and continue after going home. Other babies will have different needs at this time. Because people with Down syndrome are at risk for extra health problems at different times in their lives, your child's provider should use Down Syndrome Health Care Guidelines to make sure any new health problems are identified and treated quickly. These guidelines are available from Down syndrome Parent Groups or online at http://www.denison.edu/dsq/.
Babies with Down syndrome can grow a bit more slowly than other babies so some will need to have their weight checked frequently. Children with Down syndrome should have their growth compared with other children who also have Down syndrome. This is done by using Down syndrome growth charts. These are available at http://www.growthcharts.com.
Babies with Down syndrome greatly benefit from being breastfed. Breastfeeding is sometimes a bit more challenging for babies with Down syndrome, but most can learn to be successful. A hospital lactation consultant can assist you.
Other parents of children with Down syndrome can be an invaluable source of information and support. Many communities have local Down syndrome parent groups. Many groups offer helpful materials such as brochures, books, or DVDs to new parents at no charge. In addition, they can often help you to connect with other parents. Many have other services such as newsletters, lending libraries, Web sites, support groups, social events, and even literacy programs. To find a parent group near you, go to resources at http://www.ndss.org. In addition, there are 2 national Down syndrome associations, the National Down Syndrome Society and the National Down Syndrome Congress.
Finally, remember that your baby is a baby first. Down syndrome is only one aspect of your child; it does not define your child (Figure 4). Enjoy getting to know your baby.
The following items are things that you may want to consider for your baby and your family. Not every baby with Down syndrome needs every service listed. Please work with your baby's primary care provider to determine what specific services are needed.
* Has the diagnosis of Down syndrome been confirmed? This is usually provided as a karyotype, a chart of your baby's chromosomes, along with a written report. This will be needed later when requesting other services.1
* Is your baby stooling without difficulty? If not, or if you have questions, please speak to your baby's primary care provider about this.
* Has your baby seen a pediatric cardiologist (heart doctor) and had an echocardiogram? This is a must for all babies with Down syndrome, even if there are no signs of heart problems while in the nursery.1,2
* Has your baby's growth been checked to make sure feedings contain enough calories? Growth measurements should be recorded on Down syndrome growth charts at each checkup.
* Are your baby's thyroid hormone levels normal? This was tested when your baby was a newborn, so the results should be available to your baby's primary care provider.1
* Has your baby's hearing been tested? This may have happened in the nursery but if not, or if the test results were unclear, your baby's hearing needs to be checked by no later than 3 months of age.1,2
* Have your baby's eyes been checked? If not, this should be done by no later than 6 months of age to check for eye health and vision issues.1,2
* Have you applied for Supplemental Security Income? Depending on your family's income, your baby may qualify for this assistance. For details, contact your nearest Social Security Administration office.
* Have you begun EI for your baby? Sometimes this is referred to as Part C, so you may have spoken to a Part C coordinator about beginning this process. If not, you should ask your baby's primary care provider to assist you with starting this.
* Have you developed an Individualized Family Service Plan? One part of EI is the development of a plan (Individualized Family Service Plan) by a service coordinator. The coordinator will work with you to create a plan that addresses your family's needs and wishes and your wishes for your baby. The plan might include things such as physical therapy to assist your baby with learning new skills, consultation with a registered dietician if your baby's growth is a concern, speech and language services, service coordination, and parent training. Services agreed upon in this plan should be provided for your baby and your family, usually without charge.3
* Have you contacted a local Down syndrome organization? They may be able to provide you with invaluable information and support (Table 1).
1. Cohen WI, ed. Health care guidelines for individuals with down syndrome: 1999 revision. Down Syndr Q. 1999;4(3):1-15. [Context Link]
2. American Academy of Pediatrics. Committee on Genetics, Health Supervision for Children With Down Syndrome. Pediatrics. 2001;107(2):442-449. [Context Link]
3. National Dissemination Center for Children with Disabilities. A Parent's Guide to Finding Help for Young Children With Disabilities (Birth-5). 2nd ed. Washington, DC: National Dissemination Center for Children with Disabilities; 1994. Updated 2005. Parent Guide 2 (PA2). [Context Link]
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