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The Reed family appreciates the care their daughter, Tallulah, receives at the Gillette Children's Down Syndrome Clinic.
A new partnership with the Down Syndrome Association of Minnesota (DSAMn) makes the Gillette Children’s Down Syndrome Clinic standout when it comes to helping children and families navigate the health challenges that often come with this condition.
Down syndrome is a genetic condition that occurs when a child is born with an extra copy of chromosome 21 and is the most common chromosomal condition in the United States. It occurs in about 1 of every 700 babies.
Gillette is a regional leader in complex pediatric care and offers a family-centered approach and early intervention programs for children who have Down syndrome.
Learn how Gillette Children's Down Syndrome Clinic provides comprehensive care.
The Listberger family is pleased with the care Ellory receives from Gillette complex care pediatrician, Uyen Truong, MD.
What makes Down syndrome care at Gillette Children's different?
“We hope our clinic helps create a space for our Down syndrome families to feel heard and find community,” says Gillette complex care pediatrician, Uyen Truong, MD.
She adds Gillette’s partnership with the Down Syndrome Association of Minnesota brings many benefits and connections to families. “It’s a way for families to connect with each other and provide them with additional access to things that are not necessarily medical,” Dr. Truong says.
Internal medicine and complex care pediatrician, Tori Bahr, MD, says the “focus on sustainability” is an important development in Down syndrome care at Gillette.
“There have been many iterations of Down syndrome clinics throughout the years in Minnesota, but they have collapsed as they were built upon a wonderful, single provider without a focus on sustainability,” Dr. Bahr says. “The Gillette clinic is the collaboration of four providers bringing different perspectives and knowledge to the table.”
Dr. Bahr adds, “It is an absolute privilege to collaborate with my brilliant co-providers, Dr. Truong, Dr. Ladner, our nurse practitioner, Heidi Davis, and RN care manager, Kristine Herman, RN, all inspire me daily and make me a better doctor. The latest Down syndrome research and dreaming together about how we can make the clinic even more effective for patients is very exciting.”
Another difference at Gillette is the fact that comprehensive Down syndrome care spans the spectrum and can help children and families in many ways. This includes outpatient specialty care, inpatient hospitalizations, surgery, dentistry, audiology, imaging, sleep medicine, and sedated services.
Tallulah, her favorite doll, and her mother get ready for a sleep study. The Gillette Children's sleep medicine team is trained to help children who have Down syndrome feel comfortable during this important procedure.
Why is extensive training important when caring for children with Down syndrome?
Members of the Gillette Down Syndrome Clinic team have extensive training to manage the medical care of people who have Down syndrome or other complex conditions.
“Over my years of training and practicing I learned how important it is to understand the community in which a person lives and engages outside the hospital,” Dr. Bahr says.
“My greatest hope with this partnership with the Down Syndrome Association of Minnesota (DSAMn) is that we can develop a clinic where all are welcome. We want to see and support the entire patient identity and family unit,” she adds.
What should families expect during a visit to the Gillette Children's Down Syndrome Clinic?
Internal medicine and complex care pediatrician, Peter Ladner, MD, says families should expect in-depth conversations when they come to the Gillette Down Syndrome Clinic. “The clinic is structured to provide ample support, and families will meet with a dedicated nurse care manager,” Dr. Ladner says.
Some of the initial conversation topics during a clinic visit might include a child’s nutrition, development, common musculoskeletal issues, endocrine disorders (such as thyroid disease screening), hearing concerns, and sleep related issues such as sleep apnea.
Dr. Truong adds “We will assess a child from head to toe.”
Gillette complex care pediatrician, Uyen Truong, MD, enjoys building relationships with families and "assessing a child from head to toe."
Why are primary care providers so important to the Gillette Down syndrome team?
The Gillette Down Syndrome Clinic team also prioritizes building strong relationships with primary care providers. Dr. Bahr says building a solid team for children is critical. “We want to help primary care providers and be that team where they can bounce ideas off of us and feel they can reach out when they need assistance with coordinating care such as a sedated blood draw,” Dr. Bahr says.
The Gillette team encourages families and primary care providers reach out early in a child’s life so relationships can be established and care plans created for each child’s unique situation.
The Gillette Down Syndrome Clinic team can also help families and primary care providers with the transition from pediatric to adult healthcare.
“Medicine is more fun when we do it as a team,” Dr. Bahr says. “We couldn’t do this clinic without our primary care partners.”
