Babies with Down Syndrome- what to expect

When a baby is born with Down syndrome, it’s natural to have many questions about what this means for your child. Every baby is unique, but here are some things we often see in the newborn period:

• Feeding: Babies with Down syndrome may be a little sleepier or have lower muscle tone, which can make feeding take longer. They might need extra support with breastfeeding or bottle-feeding. Consulting with a speech therapist and/or an occupational therapist can help with any challenges.

• Growth: Babies may be smaller at birth and may grow at a different pace compared to other babies. Babies with this diagnosis are tracked using a special growth chart and their weight, length, and head growth are monitored carefully.

• Health checks: Because babies with Down syndrome can have certain medical conditions more often, your baby will have some special tests. These may include checking the heart with an ultrasound (echocardiogram) since babies are at increased risk for being born with heart abnormalities, checking thyroid function, and watching breathing and feeding closely.

• Muscle tone and development: Many babies with Down syndrome have low muscle tone, which means they may feel a little floppy. This doesn’t hurt them, but it may affect feeding, movement, and how they reach milestones. With early therapy and support, babies can make great progress.

• Bonding and family time: Your baby will enjoy being held, comforted, and loved just like any other newborn. Skin-to-skin time, cuddling, and responding to your baby’s cues are all very important.

• Looking ahead: While your baby may need extra medical follow-up and early therapies, many children with Down syndrome grow, learn, and bring enormous joy to their families. Here are some resources for families:

• National Organizations

  • Global Down Syndrome Foundation:

    Dedicated to research, medical care, education, and advocacy to improve the lives of people with Down syndrome. 

  • National Down Syndrome Congress (NDSC):

    Provides information and support, including a program to connect families with parent mentors and a network for those considering adoption. 

  • National Down Syndrome Society (NDSS):

    Offers extensive resources for families at all stages of life, including links to medical information, policy, and advocacy efforts. 

  • Down Syndrome Diagnosis Network (DSDN):

    Connects parents with online resources, parent webinar series, and groups based on shared experiences. 

• Informational and Educational Resources

  • Parent Guides: Organizations like DSDN and the Massachusetts Down Syndrome Congress (MDSC) offer free, downloadable guides such as "Welcoming a Newborn with Down Syndrome". 

  • MedlinePlus: The National Library of Medicine provides comprehensive, authoritative information about Down syndrome from various sources. 

  • American Academy of Pediatrics: Publishes health supervision guidelines for children with Down syndrome.