RMHS Offers Mother Tools to Help Infant Daughter Thrive
Like many parents of a newborn, Renée LaLonde and her husband, Luke Bishop, left the hospital worrying about whether they would be able to provide the best care for their infant daughter, Evergreen. Is Evergreen getting appropriate nutrition? Is she sleeping enough? Do we have what she needs to grow as she should?
The main difference though was that Evergreen was born with complications, and, as they would soon learn, a rare genetic syndrome.
At birth, Evergreen was aspirating into her lungs, which put her at risk for pulmonary hypertension and pneumonia. Evergreen was also born with some cardiac concerns. As a result, Evergreen needed extra nutritional support to thrive. She left the NICU with a gastrostomy tube, which was inserted into her abdomen to deliver nutrition directly to her stomach, and she was on supplemental oxygen. Renée said they received no follow-up instructions from the hospital and didn’t know what their next steps in Evergreen’s care should be.
When Evergreen was 2 months old, a family friend asked about Evergreen’s therapy plan, and Renée didn’t know how to answer. The friend referred Renée and Evergreen to Rocky Mountain Human Services (RMHS).
At about the same time, a geneticist diagnosed Evergreen with Rubinstein-Taybi syndrome (RTS), a rare genetic disorder that is similar to Down syndrome. Children with RTS can have mild to severe learning difficulties, and are usually small in stature and have broad thumbs and first toes. Only one in every 125,000 newborns is diagnosed with the condition, according to the National Institutes of Health.
The geneticist told Renée and her husband that Evergreen has a promising future, despite the diagnosis.
Evergreen and Renée then met with Wintre Brown, an RMHS Early Intervention service coordinator, who began to arrange the resources the family needs for Evergreen’s path to success. The RMHS Early Intervention Program is for children from birth to age 3 and focuses on all basic skills that babies develop in their early years, including language, reaching, rolling, crawling, walking and playing. The program is free to families who qualify. Children in the program are evaluated for and must be diagnosed with a developmental delay to qualify.
At 4 months, Evergreen was enrolled in physical, occupational and speech therapy, thanks to Wintre’s service coordination. Therapy has helped Evergreen, who is now 18 months old, develop the fine motor skills needed to pick up things like cheerios and blow kisses. She also uses a vibrating spoon that stimulates her mouth to eat properly and is developing sign language and verbal skills.
“We strive to give Evergreen all the tools needed in order to succeed,” Renée said.
Perhaps Evergreen’s favorite activity is swim therapy. She had always loved the water, so physical therapy in the pool seemed like a natural fit. But Renée still had to consider sensory issues like water temperature and bright sunlight before finding a pool that would work. Thanks in part to swim therapy at a local recreation center every other week, Evergreen is on the move and crawling.
Wintre and RMHS have also helped Renée receive the support she needs as a parent of a child with developmental delays. As Denver residents, Evergreen and her family are eligible to receive mill levy funding. Denver residents pay property taxes that support people with intellectual and developmental disabilities and their families. RMHS contracts with the City and County of Denver to make that funding available to pay for individual needs and direct services from RMHS, contracted providers and community partner organizations.
When Evergreen’s needs became apparent, Renée sold her food truck and devoted herself completely to Evergreen’s care. As a result, she has little time to herself. Wintre helped the family access Denver mill levy funding and Colorado Family Support funding for respite care, which allows Renée to leave Evergreen with a caregiver for a few hours so Renée can have time to herself to run errands or exercise. The mill levy funding also helped pay for family passes to the Denver Zoo, and mill levy funding, as well as Family Support funding, covered the cost of music therapy.
Wintre followed up with Renée on the day the mill levy funding request for respite care was due to make sure Renée received the support she needed.
“Wintre has been going above and beyond to make sure I’m utilizing the benefits for both Evergreen and myself,” Renée said.
She has seen other families who aren’t connected with RMHS struggle to coordinate various therapies and services for their children.
“It’s pretty rare what we have,” Renée said. “I feel incredibly blessed honestly.”
In June, Evergreen had a check-up with her geneticist at Children’s Hospital Colorado. Renée said the doctor was “completely floored by Evergreen’s progress.” The doctor said that Renee and Luke’s commitment to therapy in Evergreen’s daily life is evident and likely preventing some of the autism characteristics that are common in children with RTS. The doctor shook their hands and said to “keep up the exceptional work.”
“Thank you RMHS for giving Luke and me the resources and tools to help our daughter surpass the odds,” Renée said.