Wednesday, September 25, 2013

A Lifetime of Care at the Down Syndrome Program

From Left: Helen Weiner, LICSW, Courtney Swan, Willow Swan, Dave Swan, Allison Schwartz, MD, Sophia Swan, and Tomi Toler, MS, CGC.

“Hello, Willow! Hello, Willow!” Sophia Swan, 4, chirped at her baby sister in the hospital room. Willow widened her eyes and cooed back, while their adoring parents looked on. Joining the family, Alison (Allie) Schwartz, MD; Tomi Toler, MS, CGC; and Helen Weiner, LICSW, of the Mass General Hospital Down Syndrome Program walked into the room with palpable excitement. As the group shared stories, they smiled at Willow, the bubbly baby who will participate in the Down syndrome clinic throughout her entire life.

“It was definitely a very overwhelming experience to find out your child is going to need a little extra help,” Courtney Swan says. “When my husband and I talked about where Willow would receive care, it was a given that we would go to Mass General Hospital for Children. It didn’t take long for us to be proud and comfortable with the fact that we have such a special baby.”

Willow is just one of the 300 patients the Down Syndrome Program has welcomed in its first year as one of the only comprehensive adult and pediatric Down syndrome programs in the nation. After expanding its doors in July of 2012, the program has grown to include numerous age-appropriate clinics, experts from Mass General, MGHfC and the Mass Eye and Ear Infirmary, and multidisciplinary care along with state-of-the-art resources to provide seamless transition from pediatric to adult care. The all-inclusive care from childhood to adulthood is one reason the Swan family chose the program for Willow.

“At Mass General, the Down Syndrome Program won’t just care for Willow until she’s 21, it’s for life,” New Hampshire native Courtney says. “It is a relief to have a clinic like this at our fingertips.”

Allie Schwartz, MD, the program’s co-director, remembers the first time she met the Swan family. Willow’s parents were eager and knowledgeable and asked many questions about the clinics and coordination of care. While some families may be anxious for the road ahead when they learn their baby will have Down syndrome, the Swans seemed grounded and present.

“We try and encourage parents to just stay in the moment and get to know their child with Down syndrome and let us worry about the medical stuff” Dr. Schwartz says. “It became clear that it was easy for Courtney and her husband to do that.”

Willow Swan shares smiles with her sister Sophia and Allison Schwartz, MD.

The Swans come to the clinic once or twice per year for check-ups and receive periodic phone calls from Dr. Schwartz, social worker Helen Weiner, and program coordinator Tomi Toler. Courtney says she admires the personal touch the program offers, remembering a time when she brought Willow in for a neurological visit one day at Mass General, and she received phone calls from Schwartz, Weiner and Toler saying they were thinking of the family. As Willow grows, Courtney says she is grateful to have the attentiveness of her care team to answer questions as she transitions through the stages of her life.

Transitioning to the teenage years is difficult in itself, but having Down syndrome as a teenager can present unique challenges as well. Joseph Gallante, 14, and Thomas Gallante, 9, both with Down syndrome, are navigating the changes with the help of their parents Joseph and Mary Gallante and the Down syndrome team. The Gallantes first came to the program in August of 2012, and have been participating in clinics, undergoing testing for celiac disease, and benefiting from Applied Behavioral Analysis therapies the program has helped coordinate. Mary says she has been impressed with the staff’s willingness to go above and beyond, answering phone calls within the same day, writing letters to insurance companies and offering comprehensive information about her sons’ conditions.

“Families with special needs have a lot on their plate,” Mary says. “Before going to the Down Syndrome Program, I didn’t know where to turn or what to do. The willingness of the Down Syndrome Program staff to accommodate your schedule and meet your needs is just so helpful.”

Because of Joseph’s and Thomas’s ages, they are beginning to enter a challenging time as they compare their abilities to the abilities of their peers. When children with Down syndrome are younger, they often appear more similar to other kids without Down syndrome, Tomi Toler says, but once they start getting older, they can become upset because a lot of their friends might be surpassing them socially and developmentally, leading to behavioral problems. The program has implemented neuropsychological evaluations as part of the clinics, in which patients are tested for strengths and weaknesses to maximize their potential. Toler, a Special Olympics soccer and basketball coach, encourages families to consider the benefits of programs like Special Olympics, which promote confidence in individuals with intellectual disabilities.

As the Gallantes and Willow Swan grow older, they will also have the opportunity to complete transition readiness assessments, which help them become independent advocates for their own health care. The Down Syndrome Program is also developing a system to walk parents through the process of becoming legal guardians of their children with Down syndrome when they turn 18.

As the expanded Down Syndrome Program team looks ahead to their second year, they hope to expand their breadth of services with new ventures, including Latino support groups, increased psychological involvement in adult clinics and additional transitions support services. While they look forward to new prospects, they also are grateful to continue the relationships they’ve forged so far with patients like the Gallante and Swan families. From the look on Willow’s smiling face when Dr. Schwartz holds her, it seems safe to say she will look forward to her visits, too.

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