They often come fleetingly, but create a lifetime of memories for new parents: happy moments ranging from a baby’s first words to a toddler’s first steps. These events signify important developmental milestones.
For children with cancer or other diseases, such achievements may be delayed due to illness, treatment or time away from home—factors that can keep children from learning and growing normally.
Children younger than 3 years old who are at risk for such delays often receive early-intervention services from government agencies in their home states. These programs provide access to supportive services like physical therapy, occupational therapy or speech therapy.
In late 2015, Sharnelle Toledo sought the help of early- childhood intervention services in her New Mexico hometown for her 2-year-old son, Jericho Tsosie, when he did not meet growth and cognitive milestones for his age.
Therapists who visited Jericho at his home noted he wasn’t tracking moving objects with his eyes. Days later, Sharnelle noticed an odd reflection in her son’s eyes. An MRI scan revealed he had retinoblastoma, a cancer of the retina, in both eyes.
Sharnelle wanted to explore all available options for his treatment. After researching retinoblastoma, she obtained a referral to St. Jude Children’s Research Hospital.
Shortly after arriving at St. Jude, Jericho became one of the first patients in the St. Jude Early Childhood Clinic, which helps babies and toddlers learn, grow and develop as much as possible while undergoing treatment.
A starting point
The St. Jude Early Childhood Clinic was created in 2015 with a family-centered focus that brings together experts from psychology, rehabilitation services, social work and child life. The team assesses patients and then forms individualized interventions to help ensure that young patients do not fall behind their healthy peers.
“Infant mental health is vital to development, and it permeates everything for these young children. It’s their starting point,” says Jennifer Harman, PhD, a clinical psychologist in St. Jude Psychology.
Each patient in the clinic first receives a 90-minute assessment with Harman or her colleagues, Andrew Molnar, PhD, and Lisa Jacola, PhD. The team uses these initial sessions to conduct age-appropriate testing related to problem-solving skills, language abilities, motor and social skills, and school readiness.
In a newborn or young infant, psychologists look for eye contact, vision tracking, and startle and reflex responses, but they also examine the parents’ role in the child’s development.
“We look at how parents are coping with their child’s treatment, and we make sure they feel supported. We emphasize that, even in a hospital environment, there are ways to interact with your newborn and use the environment around you to promote their ongoing development,” Harman says.
The assessments vary by age, diagnosis and patient. While a wealth of information can be gathered from more active patients, psychologists rely heavily on the parental interview for children who display few signs of interaction or communication, as was true when Jericho initially came to St. Jude.
St. Jude clinicians referred 10-month-old Gideon Purchase to the clinic in February of 2016. Gideon had neuroblastoma, a tumor that generally develops in the adrenal glands. His assessment revealed problems related to motor functioning, which later turned into instances where he hit himself.
“Dr. Harman was extremely helpful in guiding us through Gideon’s issues and how we could be responsible and discipline him appropriately, knowing that normal techniques aren’t going to be appropriate due to his treatment,” says Gideon’s father, Gary Purchase.
“I was astounded at the number of services St. Jude has for young patients,” he continues, “and how much emphasis is placed on not only trying to get Gideon well but making sure he is as developmentally normal as possible.”
Implementing the plan
After forming an overall evaluation from the assessment, an interdisciplinary team of psychologists, rehabilitation therapists, social workers, child life specialists and school teachers creates a comprehensive strategy for each patient.
“These plans are generally modeled after intervention service plans available in the community with specific goals to allow for a smoother and guided transition to services once a child returns home,” Molnar says.
St. Jude Rehabilitation Services plays a huge role in implementing the plan. Jericho’s developmental interventions focused on speech therapy, occupational therapy and physical therapy. Physical therapist Angela Corr worked with Jericho, setting goals to guide him toward crawling and standing while speech-language pathologist Angela Eftink worked with his language skills.
“We measure progress with a standardized measure widely used across the country so that physical therapists in the patients’ hometowns can also track progress when they return home,” Corr says.
Jericho battled through rehab sessions three times each week. His persistence and the support of his mother paid off. Today, he can nearly stand by himself.
“He learned to sit on his own without catching his fall and how to bear weight on his arms and knees,” Sharnelle says. “It’s great to know he is able to learn, but that it’s just going to take time.”
Jericho isn’t talking yet, relying on hand signals and exclamations to communicate. Sharnelle says if he’s unable to learn how to speak, she would eventually like for him to learn sign language.
Meanwhile, Gideon recently returned home to his community in East Tennessee, where he is now walking and easing into developing the skills of a growing 2-year-old.
The return home
The Early Childhood Clinic’s goal is to smoothly transition patients from their time at St. Jude into early intervention and preschool programs in their hometowns. Programs vary by state and community, so the St. Jude team coordinates with local officials, administrators and health care providers to make sure all aspects of the child’s development are considered. Some schools and programs may initially lack vital resources if they have never before encountered children who require specialized services related to the medical diagnoses treated at St. Jude.
“We encourage families to be their child’s strongest advocate, and a lot of them already are,” Molnar says. “In the case of Jericho, his mom went home, took the road map we provided and implemented it.”
Jericho is now off treatment and returns to St. Jude every eight weeks for check-ups. Back in New Mexico, he’s enrolled in afternoon classes four days a week at a child care center.
“I felt like I was at a dead end as far as Jericho being able to do the types of things that other kids do, but the Early Childhood Clinic gave him a different outlook on what he could do and what he could accomplish,” Sharnelle says. “Sometimes I pop my head in at his child care center to see how he is reacting, and if the other kids are playing with him and being nice. He’s doing well, and he is right alongside the other kids.”
From Promise, Spring 2017