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Patients with Down Syndrome: Early Therapy Can Make the Difference

Posted on Dec 19, 2016

Johns Hopkins All Children’s Hospital celebrated the amazing progress of patients like Emily during Down Syndrome Awareness Month earlier this fall. Emily is a beautiful sparkling 3-year-old with Down syndrome who receives weekly speech therapy at Johns Hopkins All Children’s Hospital—but only after stopping to become instant friends with everyone in the hallway and waiting room.

“We didn’t know that Emily had Down syndrome until she was born,” says Emily’s mom, Nancy. The family was referred to the Early Steps program which offers support to families with newborns and toddlers facing special needs, and eventually to the Child Development and Rehabilitation Center (CDRC) at Johns Hopkins All Children’s Hospital.

Down is the most common chromosomal disorder. Approximately one in 700 babies is born with it in the United States every year. Johns Hopkins All Children’s currently treats 75 of those patients, offering multiple therapies and multi-disciplined care, especially for patients facing additional medical issues. Patients with Down, who are born with an extra chromosome, have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s, leukemia and thyroid conditions. Most lead healthy lives and face mild to moderate cognitive delays which can easily be addressed with proper educational and therapeutic programs. Finding information and education at places like Early Steps and the CDRC can be instrumental in the child’s progress.

“Emily began speech-language therapy twice a week for 30-minute sessions when she was 13 months old,” recalls her speech pathologist, Amy Yacoub. Emily loves every minute of her therapy, especially when it involves dolls. Research tells us that children with Down syndrome typically have delays in speech and language development, so early intervention is highly recommended. Emily also had a feeding evaluation in our department when she was 16 days old. Children with Down syndrome are at risk for feeding and swallowing difficulties due to certain anatomical features and oral-motor impairments.

Benefits of Sign Language

“Amy has been with Emily for therapy from the beginning,” Nancy says. “She is so gentle with her. Emily is learning sign language to help improve her communication skills. She tends to tweak the signs to her liking and Amy is great about that.”In fact, the use of gestures and non-verbal communication is a strength in children with Down syndrome, and the use of signs paired with spoken words is incorporated to allow children to communicate words they may not be able to say yet or that may not be clear, Amy explains. This often helps to reduce the frustration of difficulty communicating and can be used as a bridge to facilitate the spoken word. Children who use signs early on have been shown to have larger spoken vocabularies by age 5.

Emily receives weekly, individual speech-language therapy. At least one parent also attends her therapy sessions—and successful parental participation can make all the difference in the progress of patients with Down syndrome.

Effective Milestones

It is important to note that children with Down syndrome typically achieve all of the same milestones in the same sequence as other children, just at a slower rate. “While it is difficult to predict exactly what Emily’s speech and language will be in the future, evidence-based research supports the use of continued speech-language therapy and consistent parent participation and home carryover to continue to improve her skills in these areas,” Amy explains.

“My ultimate goal is for Emily—and for all of our patients with Down syndrome—is for them to be able to consistently communicate with family, friends and professionals through any modality. Emily is a happy, social, motivated child with parents who have always been closely involved in her therapy, and I see her continuing to make amazing progress,” Amy concludes.

Early intervention for children with Down syndrome or any other speech and language delays is key. Johns Hopkins All Children’s can provide education and information to families facing Down syndrome. Together, amazing progress is possible.

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