When Jessica McClintock’s baby was born prematurely, he required a feeding tube and breathing tube, but otherwise he was fairly healthy. “He was small—four pounds and 12 ounces—but there was nothing especially wrong,” she said.
However, “preemies” are at risk for such problems as gastrointestinal disorders and developmental delays. Sure enough, he was constipated a lot, and as time went on he wasn’t able to sit up without support. Linkyn was born at seven-and-a-quarter months, which is considered very preterm. Most “very premature” babies (born between 28 and 32 weeks) eventually recover with few lasting effects, but may have special needs for the first few years.
McClintock herself was already receiving psychotherapy from one of CHD’s clinicians, so she contacted CHD’s Early Intervention (EI) program, which helps infants and children up to three years old get the extra help they need in learning to walk, talk or reach other milestones. She knew that our EI services have a great reputation, with the program having specialized in home-based therapy since 1978. The problem was that the COVID pandemic had forced CHD to shift into providing telehealth instead working with families in their own homes or in the kids’ room at our Birnie Avenue offices.
Continuity of Care
In the spring of 2020, across the country—and around the world—the COVID crisis made the delivery of early intervention services for children much more challenging with the transition to telehealth. Indeed, CHD’s EI program of 20 staff members had to quickly pivot in a new direction, leveraging technology to maintain access to their services for their caseload of more than 200 families. They had to provide virtual solutions to give those they serve the support they needed, and they came through, maintaining connections online with flexibility and creativity.
There were many challenges, but also some positive outcomes during this period, including CHD therapists increasing parent interaction through coaching interventions while engaging in remote service delivery. Now they are delivering their services in people’s homes again. Below are some of the stumbling blocks—and success stories—as CHD’s EI program provided a continuity of care since the pandemic began.
A Part of the Family
Although CHD’s EI program was able to provide effective services using the telehealth format, “virtual was just not the same,” said McClintock. “I needed them to show me things in person.”
As the pandemic became somewhat more manageable and society’s lockdowns subsided, CHD’s EI program began going back into people’s homes, which at first involved therapists wearing gowns, gloves, and masks—and they couldn’t bring the program’s toys with them. Still, they managed to provide their services successfully using personal protective equipment and maintaining social distancing protocols.
McClintock said EI Program Supervisor Cindy Napoli showed her how to give her son massages to relieve constipation, moving built-up air out of Linkyn’s digestive tract. “She demonstrated how to give him infant massage for his belly and bowels, and it worked,” she said.
As McClintock was being interviewed for this story while Linkyn played, when she said the word “belly,” Linkyn looked at her and began patting his stomach, showing off his growing vocabulary and prompting a smile from his mother.
“CHD’s Early Intervention program was like a lifesaver,” said McClintock. “Before Cindy came into our lives, we were kind of stuck. Now he’s a brand new baby. [Physical Therapist] Diana Kenney helped him with his gross motor skills—first how to sit, and then crawl and walk. Now he can run, and we’re working on stairs. I would say that for gross motor skills, he’s at 100 percent.”
While gross motor skills involve the larger muscles, fine motor skills work the small muscles of the hands, fingers, and wrists. EI Developmental Specialist Carrie Colby helps Linkyn with coloring, painting, drawing, and crafts. “Now we’re working on how to hold a pencil or crayon, and we’re finding that he’s left-handed, so maybe he’ll be a genius,” McClintock said with a laugh, referring to a 2017 University of Liverpool study that links left-handedness with increased talent and intelligence.
“The occupational therapists are just so good,” she said. “They’re part of our family.”
EI Occupational Therapist Diana Ross said one of the biggest drawbacks to delivering her services via telehealth was not being able to be hands-on with the children. “I remember being on Zoom with a family for a while, but once I started seeing the little boy in person, I was able to feel for myself that his muscles were tight,” she said. “This made me wish I was able to get in sooner, because his mom probably didn’t realize this was significant enough to mention to me. Had I known, I would have been able to give her more strategies. You can only see so much through a screen.”
Napoli pointed out that it’s in the homes where the therapists can make the most profound changes. “In the home, we can adapt the environment” to meet the needs of the child, she said. “And we can teach the parents how to adapt their environment.”
For example, a therapist can rearrange the furniture a certain way to enhance the child’s walking, according to EI Program Director Erinne Gorneault. “The therapist can ask, ‘Do we need an ottoman in the center of the room so the child can transfer from one piece of furniture to the other?’ With telehealth, you miss using the environment to enhance the child’s development,” she said.
Nonetheless, one of the benefits of using telehealth was that therapists were actively guiding parents to perform the therapy themselves, according to Ross. “A big part of what early intervention does is supporting parents through a coaching model to promote family involvement,” she said. “When we weren’t able to be hands-on with babies and children, we had no other choice but to take on the coaching model fully. Parents were fully involved and were encouraged to know exactly what to do to help their children. We told parents that they were the therapists during this time.”
Napoli agreed, comparing the coaching model to the tendency of many parents to take their children to sports coaches or academic tutors to learn athletic or academic skills. “This is no different than to look at us as being coaches to the parents for them to learn and practice parenting skills or developmental skills,” she said. “We are clinicians and specialists, but in the end it is the parent who is carrying out the play and behavior skill set, along with the strength or feeding exercises that we are giving them.”
Napoli said that EI therapists coach parents side-by-side in the care of their children using the PIWI (Parents Interacting With Infants) approach, an evidence-based philosophy that keeps the parent-child relationship at the center, based on the view that the parent is the child’s first and best teacher. “We are teaching parents and helping them to become better advocates, so that when they leave early intervention when their child is three years old, they are prepared to do all of this on their own with their pediatrician, the community, and the school,” she said.
Gorneault said therapists typically try to model a specific skill, encourage the parents to also try it, and then hope that it carries over into their daily routines. “Therapists are in the home only one hour a week, but parents are with the baby almost 24/7,” she said. “They are the ones teaching the children.”
Ask a CHD EI clinician to provide a single pivotal moment that reflects how rewarding the job can be, and you will get several answers, because their work involves so many transformative experiences.
Napoli recalled the time when, more than a decade after she had helped a child, his parents reached out to say, “Thank you again—you changed our lives forever.”
Ross talked about a boy named Myesean, who was born 11 weeks early and was in the newborn intensive care unit for two months. “Since beginning early intervention, I have seen Myesean learn to roll, sit, get in and out of sitting independently, crawl, and now he is taking several steps independently,” she said. “He had truly thrived with our support. Seeing kids learn to roll over, crawl, walk, and feed themselves—after not being able to do those things previously—is just awesome.”
She recalled receiving a text a few weeks ago from one of the families she works with. It was a video of a milestone moment—their daughter walking for the first time. “The fact they thought of me and immediately wanted to share definitely put a smile on my face,” said Ross.
Another time, Ross heard from a family almost a year after the child had ended her time with CHD’s EI program when the child turned three. “The mom sent me an update on how her son was doing, and said she will never forget how much I did for them,” said Ross. “It’s moments like those that confirm we’re making a difference in the lives of these families.”