One of the main questions on the minds of many new and expectant parents is, “Will my baby be healthy?” It is important to note that many babies with Down syndrome are born without any health problems.
However, it is true that newborns with Down syndrome are at a higher risk for certain complications. While your baby may not have any of these potential complications, it is important to be aware of them so you can catch them early if they do occur. This section discusses possible health concerns and useful tools for monitoring your child’s health care and growth patterns. It also provides information on how to select a pediatrician, questions to think about when making decisions about potential treatments, and a discussion of feeding options.
What Health Conditions Are Associated with Down Syndrome?
Newborns with Down syndrome are at a higher risk for congenital heart defects, hearing and vision loss, respiratory problems, obstructed digestive tracts, childhood leukemia, and other health conditions. They also have an increased susceptibility to infection. Doctors routinely screen for these conditions because some, such as a heart defect, may be present even if no symptoms are readily apparent. While the list of possible health problems can be frightening, keep in mind that your baby will not necessarily have all, or possibly any, of them. If he or she does happen to have one or more of these complications, advances in medicine have rendered most conditions treatable. For instance, the majority of heart conditions can be corrected through surgery.
You can ensure your newborn’s optimal development through informed health care. There is a tremendous amount of information available, so it is important not to let yourself get overwhelmed. Learn at your own pace, and try to focus on those things you can do in the present to get your baby off to a good start. A good tool to use is the Health Care Guidelines for Individuals with Down Syndrome (see NDSS Resources below).
What Should I Look For In a Pediatrician?
For optimal health care, it makes sense to locate a developmental pediatrician or a specialist knowledgeable about Down syndrome if any are available in your area. However, keep in mind that it is not always necessary to find an expert on Down syndrome. The most important thing when you have a baby with special health care needs is to find a doctor who is willing to learn about the condition and collaborate with you to ensure the best possible care for your child.
One of the best ways to find a pediatrician is to ask families of other children with Down syndrome in your area for recommendations. Your local parent support groups can be a good source of referrals. As a parent, you have a right to interview potential physicians to find the best one for you. Find someone you feel comfortable with and with whom you can communicate freely. Also, do not be intimidated when speaking to physicians. A good doctor recognizes that parents are experts when it comes to their children. He or she respects their concerns and sees them as partners.
Should I Breastfeed or Bottlefeed My Baby with Down Syndrome?
You may be aware of the tremendous benefits that breastfeeding provides to newborns. Breastmilk contains natural antibodies that fortify babies’ immune systems. This is especially important to infants with Down syndrome, who have higher rates of respiratory and other infections. Breastmilk can also reduce bowel problems, which are more common in babies with Down syndrome, and contains an ingredient known to promote brain growth and development.
In addition, the physical process of breastfeeding strengthens babies’ jaw and facial muscles, which helps lay a good foundation for speech and language development, and provides skin-to-skin contact, a form of sensory stimulation that creates neural connections that can facilitate future learning.
There are many great reasons to breastfeed, but whether or not to do so is a personal choice. Some mothers breastfeed exclusively while others bottlefeed. Still others combine the two. There are many factors that play into this decision, including whether or not you feel your body is producing enough milk, whether or not your baby has health complications, and whether or not you plan to return to work soon after delivery.
If you do plan to breastfeed, be aware of certain factors that might make it challenging. Babies with Down syndrome have low muscle tone, so it may be difficult for your baby to “latch on” to your breast at first. As these babies also tend to be sleepier than other infants, you will likely have to make an extra effort to raise your baby’s alertness and keep him or her awake throughout the entire feeding. Also, if your baby needs surgery, he or she may require a feeding tube for a short time.
Don’t worry, though. There are many organizations and individuals that can help you get started and provide tips for overcoming these and any other challenges you may encounter. These same specialists can help you learn how to pump, store and transport your breastmilk or how to select the right baby formula to meet your infant’s needs if you choose to bottlefeed. When it comes to feeding, the important thing is to make the choice that is best for you. Feedings should provide quality time for a parent and child to bond, so they should always be as comfortable and stress-free as possible for both individuals. A meeting with your hospital’s lactation specialist is a great place to start learning about what feeding option may be right for you.
NDSS RESOURCES
- Health Care Guidelines
- Health Care Providers
- Associated Conditions
- An Evening with William I. Cohen, M.D.
EXTERNAL RESOURCES
- Australian Breastfeeding Association
www.breastfeeding.asn.au
The Australian Breastfeeding Association has a section of their website dedicated to breastfeeding children with Down syndrome at www.breastfeeding.asn.au/bf-info/down - La Leche League International
www.lalecheleague.org
La Leche League was founded to give information and encouragement, mainly through personal help, to all mothers who want to breastfeed their babies. Information specific to breastfeeding children with Down syndrome can be found at: www.lalecheleague.org/FAQ/down - Breastfeeding a Baby with Down Syndrome
This brochure published by the Canadian Down Syndrome Society provides detailed information for parents about breastfeeding infants with Down syndrome.
DVDS
- Down Syndrome: The First 18 Months. Blueberry Shoes Productions.
- Kids with Down Syndrome: Staying Healthy and Making Friends. Blueberry Shoes Productions.
BOOKS/ARTICLES
- Babies with Down Syndrome: A New Parents’ Guide (Third Edition). Skallerup, S. (Ed.) Bethesda, MD: Woodbine House. (2008)
- Coming Home from the NICU: A Guide for Supporting Families in Early Infant Care and Development. Vandenberg, K. & Hanson, M. Baltimore, MD: Paul H. Brooks Publishing Co. (2013)
- Common Parent Reactions to the NICU. American Academy of Pediatricians, 2009. Can be found at: www.healthychildren.org/English/ages-stages/baby/preemie/Pages/Common-Parent-Reactions-to-the-NICU.aspx
- Sleep Better! A Guide to improving Sleep for Children with Special Needs, Revised Edition. Durand, V. Baltimore, MD: Brookes Publishing (2014)
- The Down Syndrome Nutrition Handbook. Guthrie Medlen, J. Lake Oswego, OR: Phronesis Publishing. (2006)
- A Parent’s Guide to Down Syndrome: Toward a Brighter Future. Pueschel, S. Baltimore, MD: Brookes Publishing. (2002)
Written especially for new parents, this book addresses the medical, emotional, educational and social issues related to Down syndrome.