Down Syndrome FAQs

Children's Specialized Hospital
Down Syndrome Center of Excellence

Frequently Asked Questions

What can I expect from my visit at the CSH Down syndrome clinical program?

Children’s Specialized Hospital offers multidisciplinary assessments for children with Down syndrome ages 0-21 years. The team includes:

• A physician experienced in caring for children with Down syndrome
• Speech, physical and occupational therapists who each evaluate the child’s motor, feeding, adaptive and communication skills

Your child will have an initial, 1-hour visit with the physician, either in person or via telehealth, followed by a multidisciplinary, in person visit 1-2 weeks thereafter. The multidisciplinary visits are about 2 hours long. We encourage families to bring a snack and a favorite toy, to make your child comfortable in a new environment.

How can my child be seen in the CSH Down Syndrome clinical program?

Ask your child’s pediatric provider for a referral to our Down syndrome Center of Excellence. If the provider works within the Children’s Specialized system, they will be able to send a referral directly through our medical record. If your child’s pediatrician works outside of Children’s Specialized Hospital, please ask them to fill out this referral.

What if I suspect that my child has a co-occurring developmental condition?

The Down Syndrome Center of Excellence team is experienced at assessing for co-occurring mental health and neurodevelopmental diagnoses and providing guidance on supporting positive behavior. When needed, a referral for a psychological evaluation will be facilitated.

I have additional questions. Who can I call?

You can reach our Down Syndrome Center of Excellence patient access coordinator by calling201-243-4311.

Who is Dr. Noemi Spinazzi?

Dr. Noemi Spinazzi is a pediatrician who specializes in caring for children with Down syndrome as well as patients with complex medical and developmental care needs. She has been working with individuals with Down syndrome for over a decade and has deep ties to the community. She is a leading expert in the dual diagnosis of Down syndrome and Autism Spectrum Disorder (DS+ASD), heading the DSMIG (Down Syndrome Medical Interest Group) DS+ASD workgroup. Dr. Spinazzi is an active researcher who focuses on health equity, contributors to developmental trajectories in Down syndrome, vaccine safety, and Down Syndrome Regression Disorder (DSRD). She is closely connected with multiple Down syndrome-focused organizations through service and collaboration.