Advice for New Parents - What is Appropriate Medical Care for Newborn with Down Syndrome?

Things to do When You Learn Your Baby has Down Syndrome - But Not All Today!

A-Z List of Professionals

Feeding an Infant with Down Syndrome - Rebecca Sanez M.D.

La Leche League - Is it possible to breast feed my baby with Down Syndrome? 

Helping Babies Who Have Down Syndrome Learn to Breast Feed - by Renee Toth (email This e-mail address is being protected from spambots. You need JavaScript enabled to view it )

Website - Ohio Lactation Consultant Association

Milestones -

      Developmental Milestones - chart birth to age three

      Gross Motor - chart birth to age three

      Motor & Self-Help - chart birth to age three

      Speech and Language - chart birth to age six

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 echo cardiogram. 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.

Please see the USOD Medical Information Section for more specific medical resources and also the Newborn Services Clinical Guide for Practitioners, for additional information.   Return to top

Things to do when you learn your baby has Down syndrome…

but you don't need to do them all today!

• 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. Contact the Up Side of Downs for more information & resources in the Greater Cleveland Area. Request your free New Parent Packet.
• Learn more about Down syndrome. You've probably got lot s of questions about your child's diagnosis and what it means for the future. Much information is available on this website, the internet; some through local bookstores and libraries. Check out the copyright dates, though. Anything published before 1990, probably is outdated 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.
• Find out about early intervention programs in your area. Ohio has the Help Me Grow - Early Intervention Program for babies, from birth until the third birthday. Come to our mom & tot playgroups to explore resources, friendships & support with other families. By federal law (Individuals with Disabilities Education Act or IDEA) , your baby has the right to a free, appropriate public education that can help her grow and develop. This education must be provided from birth. A child with Down syndrome has a disability under the law and is immediately eligible for all types of services.  This means that your child should be given physical therapy, speech therapy, occupational therapy, and any other therapies that are appropriate for her.  In addition, you have the right to receive support and advice on early stimulation for your child. You can also attend special health and development clinics. More information about your rights under the law can be found by contacting either The Arc (a national organization on mental retardation) or  The National Down Syndrome Society. 
• 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.  Providers who see lots of children with Down syndrome can be a wealth of information for you and your primary physician. Down Syndrome Clinics in Ohio
• 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.    Return to top

A – Z of the professionals and how they can help

From birth, people with Down’s syndrome will have contact with a variety of professionals from health, education and social services. Some people require very little intervention and prefer to get on by themselves, others need physical assistance and ongoing support.

Although some of these professionals will have a great deal of experience of working with people with learning disabilities, others will have had very little. However, more and more professionals are coming into contact with people with Down’s syndrome as access to primary care and mainstream services continues to improve.

Audiologist – Usually has a clinic within a hospital. It is recognized that traditional testing methods are not always reliable and many clinics employ new techniques in order to accurately assess hearing.

Cardiologist – A doctor who specializes in disorders of the heart. Specific information on Cardiac issues.

Community Nurse Learning Disabilities – A registered nurse in the field of learning disability, usually attached to community learning disability teams. They give information, support, assessment and therapy.

Dentist / Orthodontist – Some areas have specialist dental services but the current impetus is for people with Down’s syndrome to be seen by a local dentist whenever possible, with input from a specialist if problems occur. Specific information on Dental issues.

Dietician – Usually based in hospitals although occasionally in health centres. Provide advice and information about cooking and feeding – people with Down’s syndrome tend to become overweight and children are prone to constipation.

Educational Home Visitor – A trained teacher attached to the regional psychological service. Works in the home planning an educational program for the parents to undertake with their child.

Educational Psychologist – Works on the areas of learning and behavior.

Genetic counseling – Many new parents of babies with Down’s syndrome seek genetic counseling before having further children.

Visiting Health Nurse – A nurse with specialist training in advising families with babies and young children, who works closely with the G.P. Health Visitors carry out development checks.

Occupational Therapist – Breaks difficult tasks down into smaller, more manageable steps. The steps are then built up gradually until the whole activity is completed. Works on the activities of daily living.

Ophthalmologist – Eye specialist.

Pediatrician – A doctor specializing in the care of children. Will monitor the baby’s development and general health. Will undertake the tests and check ups that are routinely done for all children with Down’s syndrome.

Physiotherapist – Works with posture and movement to develop muscle tone and balance.

Speech and Language Therapist – Works on ways of promoting the development of communication and listening skills.

Social Worker – Helps the person with Down’s syndrome and their family in areas such as accessing respite or longterm housing, applying for benefits, getting a day resource place etc.

Teacher – Many children with Down’s syndrome attend mainstream school and often receive help from the learning support assistant. In special educational schools, teachers have usually had specialist training.   Return to top

Feeding the Infant with Down Syndrome by REBECCA B. SAENZ, M.D.

An infant with Down syndrome can be breast-fed. Breast milk is generally easier to digest than formulas of all types. Furthermore, breast-fed infants have fewer upper and lower respiratory infections, as well as a lower incidence of otitis media, atopic diseases and respiratory allergy. Breast feeding also enhances oral motor development, which is the foundation of speech. The psycho logic benefit derived from the bonding of mother and infant can be extremely important at a time when, because of the infant's disability, the mother may be questioning her own adequacy. Even if the infant is unable to breast feed directly, expressed breast milk given another way may be beneficial for the child's health and the mother's emotional wellbeing.

Sucking problems related to hypotonia or cardiac defects may make breast feeding initially difficult, particularly in the premature infant. In this situation, the mother can be encouraged to feed the infant expressed milk by other means, such as a nursing supplementary or a bottle, or, occasionally, by gavage (forced feeding, especially through a tube passed into the stomach). After several weeks, the infant's sucking ability often improves, and the infant becomes capable of nursing effectively. A nursing supplement may be used to encourage the infant who has a weak suck.

Occupational therapists, speech therapists, lactation consultants and breastfeeding support groups usually have specific resources for the mothers of infants with Down syndrome. Mothers may find these resources invaluable. If the breastfeeding infant is not gaining enough weight, consideration should be given to partial supplementation with formula or additional expressed breast milk. A nursing supplement may also be used to provide additional caloric intake while the infant continues to breast feed.

Many infants with Down syndrome tend to be "sleepy babies" in the early weeks. Consequently, feeding only on demand may be inadequate for both the caloric and the nutritional needs of the infant and stimulation of the mother's milk supply. In this situation, the infant should be awakened to feed at least every three hours, or every two hours if only breast feeding is being used. The mother may need to pump her breasts to stimulate the production of an adequate supply of milk.

The mother who prefers formula feeding should also be encouraged to awaken her infant at least every three hours to ensure adequate caloric and nutritional intake. Reflux may be reduced by holding the feeding infant in a semi-upright position and keeping the bottle appropriately angled to prevent the swallowing of air.

Unless weight gain is a problem or an infant with Down syndrome has a particular medical disorder, no specific formula is currently recommended. Formula additives or gavage feeding may be necessary in infants with very poor weight gain.

The diet of an infant with Down syndrome should be advanced according to the usual schedule for food groups. However, delayed eruption of teeth may put off the introduction of hard solids. Parents should be reminded that a great deal of patience is required to teach a child with Down syndrome to feed from a spoon and to drink from a cup. Return to top

Is it possible to breastfeed my baby who was born with Down Syndrome?

How wonderful that you want to give your baby the precious gift of your milk! Babies with Down Syndrome experience special benefits from breastfeeding beyond the many advantages to typical newborns.

• Breast milk provides extra protection against infections and bowel problems, which are more common in babies with Down Syndrome.
• Breastfeeding improves mouth and tongue coordination, giving a child with Down Syndrome a real developmental advantage.
• The act of breastfeeding provides additional stimulation for your baby.
• Breastfeeding promotes closeness between mother and baby, and enhances mothering skills.
• Extra patience and reasonable expectations are critical when breastfeeding a baby with Down Syndrome. Low muscle tone and a weak suck can impede the baby's ability to breastfeed.

Here are a few tips that may help you breastfeed your baby.

• Because babies with Down syndrome are often sleepy and placid, you may need to interest your baby through frequent breast feedings throughout the day, wake him fully before breastfeeding, or provide extra touch and stimulation to keep him alert.
• Pay extra attention to positioning your baby at your breast. Try to keep your baby's body elevated near your breasts with his ear, shoulder and hip in a straight line and use extra pillows for support. See LLLI FAQ "How Do I Position My Baby to Breastfeed?" for more information.
• If gulping and choking are a problem, try positioning your baby so that his neck and throat are slightly higher than your nipple.
• If poor muscle tone makes it difficult for your baby to latch on well, try supporting your baby's chin and jaw while nursing using the "Dancer Hold." (The name of this position was coined by Sarah Coulter Danner, RN, CPNP, CNM, IBCLC and Ed Cerutti, MD.  "Dancer" comes from the first letters of their last names (Dan + Cer).) Hold your baby with the arm opposite the breast you'll be offering. Using the hand on the same side as the breast you are offering, cup your breast with your thumb on one side of the breast, palm beneath, index finger pointing outward, and the other three fingers on the other side of the breast. Use your index finger to support your baby's lower jaw while nursing. As your baby's muscle tone improves through breastfeeding and maturity, he will become able to support himself and breastfeed more effectively.

This FAQ gives general information for mothers of babies born with any disability.

Here is a link to a story from NEW BEGINNINGS, La Leche League's magazine for mothers, written by a mother of a baby with Down Syndrome. It is called "Nobody Smiles Like I Do."

Resources for Additional Information

These publications may be available from your La Leche League Leader or from the LLLI Online Store.

Breastfeeding a Baby with Down Syndrome. Provides education and support for the mother who is breastfeeding a baby with Down Syndrome.

Defining Your Own Success: Breastfeeding after Breast Reduction Surgery, by Diana West: This thoroughly researched book has useful information far beyond what its title suggests. It contains extensive information about supplementation as well as increasing milk supply. Some mothers of babies with Down Syndrome will find this very useful.

La Leche League's classic book, THE WOMANLY ART OF BREASTFEEDING, has lots of good information on breastfeeding your baby. This book is available from the LLLI Online Store. You may also find it in bookstores or libraries in your area. It contains all the latest research-based information available about breastfeeding.

Many mothers find it helpful to call a local La Leche League Leader or attend a La Leche League meeting. The support and information of other breastfeeding mothers may make a big difference for you. Check out the section of our Web site entitled "Finding a Local LLL Group."  Return to top