The many adventures of Wesley: Specialty care helps toddler with heart disease reach neurodevelopmental milestones

Will and Alicia Ethridge knew their unborn son would need complex open-heart surgery soon after birth, due to a serious congenital defect that was detected in utero.

Wesley suffered from a genetic form of cardiomyopathy, which meant the walls of his heart muscles were thickened, and blood flow to the left side of his body was restricted.

The knowledge about their son’s disease prepared them for many things about the impending medical journey (including arranging for cardiac surgery at the Boston Children’s Hospital Heart Center, just a few hours’ drive from their home in Maine) but there were many more things about the months to come that they did not expect.

Immediately after birth in October 2013, baby Wesley was transferred to the (CICU) at Boston Children’s. His case quickly became more complicated than anyone had anticipated.

After Wesley’s initial surgery, he had five more, all before his second birthday. In February 2015, he fell critically ill and was listed for heart transplant. He received a new heart that May.

While supporting their son through his various medical trials, Alicia and Will were simultaneously concerned about his neurological development.

“There were very obvious delays right away,” says Alicia.

Wesley was intubated during his first few weeks of life in the hospital, so he struggled with feeding for a while. Due to tightened muscles called contractures, he couldn’t raise his arms above his head, and his clubfoot made learning to walk challenging.

“It was clear to Will and I that we were going to need help,” says Alicia. “We had a child with a complex medical history who was just a few months old. We couldn’t do this by ourselves.”

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Help from the Cardiac Neurodevelopmental Program

After Alicia learned about the Cardiac Neurodevelopmental Program (CNP), she immediately requested an appointment.

Psychologist Dr. Samantha Butler evaluated Wesley’s development when he was two months old. She discussed how to support Wesley’s social, motor, feeding and cognitive development while in the hospital, and how to support family coping. She provided detailed descriptions of the services and therapies Wesley needed and advice on how to access them.

“Dr. Butler helped us understand how important early intervention services are for a kid like Wesley,” says Alicia.

When Wesley was readmitted to Boston Children’s, Dr. Butler worked with Child Life Services to coordinate his therapy providers. She helped organize a litany of services, including:

  • physical therapy
  • occupational therapy
  • feeding/nutrition
  • speech therapy
  • music therapy
  • child life services
  • neurodevelopment care

Continuity of neurodevelopmental care

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King Wesley

When Alicia and Will brought Wesley back home to Maine, they used Butler’s recommendations to arrange regular speech, physical and occupational therapy services through early intervention. “It made all the difference for us and has transformed Wesley’s life,” Alicia says.

Wesley is still followed regularly by the Cardiac Neurodevelopmental Program. Neurologist Dr. Caitlin Rollins, who first evaluated Wesley when he was an infant, has since seen him several times.  She helped the family understand the implications of a brain MRI that showed a reduction in Wesley’s white matter, which could put him at risk of developing an attention deficit disorder or other learning problems.

Dr. Rollins helped the family anticipate learning challenges and consulted with Wesley’s in-home therapists. She also referred him to the at Boston Children’s when she noticed his expressive language delays.

CNP psychologist Dr. Anjali Sadhwani evaluated Wesley shortly after he turned two, and her recommendations helped Will and Alicia secure additional speech and language services for their son.

During each of Wesley’s hospital admissions, Dr. Butler worked with the Department of Child Life to coordinate his therapies so he could continue to work on his developmental goals.

“He definitely had some regression,” Alicia admits, “but we wanted to make sure he didn’t fall too far behind.  It was Dr. Butler who made sure he continued with therapy, and that the schedules were always convenient for us.  Wesley was having his needs met, and he was working on progressing as best he could.”

Looking ahead to a bright future

“There’s been so much that we haven’t been able to plan for, and that took an emotional toll. But his development is something we can monitor.  We know he’s at risk for ADHD, learning difficulties, and organizational challenges.  Because we know this, we can be prepared.  That’s been important to me, emotionally, as a mother, to know that there are some things I can be really proactive about and plan for.”

Wesley has certainly come a long way since his heart transplant.  Back home in Maine, he loves painting, hiking, and building with Legos and train tracks.

His periodic developmental assessments remain incredibly meaningful to Alicia and Will. They plan to continue to work with the Cardiac Neurodevelopmental Program throughout Wesley’s childhood and into his teenage years.

“Having these check-ins gives us a sense of perspective and how much progress Wesley has made,” says Alicia, “especially now that he’s well and has a healthy heart.”

“He’s super independent,” she continues.  “His flexibility and mobility are much better than anyone had expected, and I think that’s a testament to his experience working with people who have understood his development every step of the way.”

Wesley is now attending preschool, and in his most recent evaluation with Drs. Sadhwani and Rollins, all his developmental scores were in the average range.

“Things are just falling into place really beautifully,” says Alicia.

Learn more about the Cardiac Neurodevelopmental Program.