Dayanara’s story: A team-based approach leads to greater confidence for girl with Down syndrome

Whenever Dayanara Benitez, 10, comes to Mass General for Children (MGfC), the exam room turns into a dance hall when she shows off her moves. Dayanara, who has Down syndrome, is at an age when her care team starts to discuss life at home and school, and it is obvious from her vibrancy and confidence that she is thriving.

There has been an insurgence of confidence not only in Dayanara, but across her entire family since coming to the Down Syndrome Program at MGfC and Massachusetts General Hospital in 2014. When Wendy was pregnant with Dayanara, she learned through prenatal testing that her daughter had Down syndrome. She and her husband, Bertilio, of East Boston, Mass., were overwhelmed with questions. When Dayanara was 5, they transferred her care to MGfC. Right away, they felt that they were in the right place.

“We initially came to MGfC because it was closer to home and easier to schedule appointments. Everyone was so friendly and provided a lot of helpful information. As a young mom, I was scared and overwhelmed because I didn’t know much about Down syndrome at first, and I kept focusing on the negatives,” said Wendy. “They have so many resources and connections that have been helpful for Dayanara as she grows up.”

The Down Syndrome Program takes a holistic approach to care that begins with prenatal testing and spans throughout a person’s entire life. Patients and families spend a full day meeting with physicians, a nutritionist, social worker and a resource specialist, who also has Down syndrome. They also meet with other specialists, such as neuropsychologists, physical therapists, occupational therapists, speech and language pathologists, feeding therapists, dentists, ophthalmologists and/or audiologists, as necessary.

“What makes the Down Syndrome Program unique is our core of providers. We are a one-stop shop. There are multiple phases of care, divided by age groups, where each visit is customized to the needs of the patient and their family,” said Brian Skotko, MD, MPP, director of the Down Syndrome Program and the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. “The physicians in our program also evaluate patients and families side-by-side with our program’s social worker in the same room, so it’s a really dynamic appointment.”

The team-based approach creates a wrap-around model of care, which allows providers to get an in-depth understanding of the person and their family, not just their genetic or medical condition. “Here, we believe in supporting the whole family,” said Skotko. “Dayanara has a younger brother and what a benefit it will be for him to grow up with her as his big sister from whom he can learn. As he gets older, we can help answer his questions about her and about Down syndrome.”

In partnership with Dayanara’s family, the team makes medical and developmental recommendations to ensure that Dayanara is meeting her full potential. Medically, they follow Dayanara to make sure she is up to date on all the health care recommendations for children with Down syndrome. For example, the Benitez family was able to find out that Dayanara also has celiac disease, and an action plan was put into place by the team’s nutritionist. Developmentally, the team recommended that she undergo an evaluation for a communication assistance device for her language delay – a tool that has boosted her confidence and social skills when interacting with others. The device is especially helpful at school where Dayanara can express her needs to her teachers and peers.

“Our neuropsychologists can also provide insights into how children learn best and what supports are needed to maximize their learning at school,” said Skotko. After Dayanara met with one of our neuropsychologists, Gretchen Timmel, MEd, the team’s educational advocate, did a classroom observation to help ensure that the recommended supports were successfully implemented in Dayanara’s classroom. “This is a service Dayanara has benefitted from immensely. She is a beautiful, blossoming young girl who is coming into her own personality and taking a more active role in her care. She has rhythm, she has groove and she brings such joy to her life, her family’s life and to our lives.”