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Inspired By Her Son, Lead RT Aims to Advance Respiratory Care in NEK

Monday, December 31, 2018

When Heather Nelson, NVRH's lead respiratory therapist, sits with patients in the emergency department, meets with them in support groups, or works with them through treatment plans, she knows the importance of her presence, her knowledge, and her calm demeanor. For her, respiratory care is personal.

Heather’s second child, Caleb, was born with congenital central hypoventilation syndrome (CCHS) – a rare genetic disorder that causes the body to never develop the autonomic breathing function. Without such function, a person can hypoventilate, especially during sleep, and management of the disorder often requires a pacemaker to stimulate diaphragm, a trach affixed at all times, and a ventilator at night. For much of his early life, Caleb spent days, weeks, and months in and out of the hospital with his parents at his bedside. During that time, Heather sought answers about the rare disorder and was eager to learn alongside the hospital staff, seeking to be able to provide the best care for her son once discharged from the hospital.

“No one was talking about CCHS, leading research, or had many answers about it. I knew if Caleb was going to manage the disorder and lead the fullest life possible, I’d have to be able understand the disorder and provide care too,” Heather said.

Committed to becoming educated and equipped to provide the best care, Heather entered a respiratory therapy degree program, and during her clinical training, it became apparent the choice would lead to something much greater.

“I enjoyed working with others, and ongoing encouragement from practitioners and patients validated the choice to further pursue respiratory therapy as a career to help others too,” Heather said. “At first, I told people ‘I already live this’ and didn’t want to work with in it too, but that quickly changed as I learned more, worked more directly with patients, and saw the importance of respiratory therapy in overall healthcare.”

Heather spent her clinical time at a hospital and rehabilitation center in east central Vermont, but when inquiring with a professional mentor about what type of facility she could make the largest impact for patients at following clinicals, she was advised to pursue an opportunity with a rural healthcare system.

“I developed great critical thinking skills and built a strong clinical foundation at a larger facility but knew the environment I was looking for – partnership with providers, working directly with patients, respect for my expertise, and the ability to make a difference – would be best in a smaller hospital,” Heather said. “This desire brought me to NVRH.”

Now in her fourth year at NVRH, and recently becoming the lead respiratory therapist, Heather has high hopes for continuing to advance respiratory therapy at NVRH and for individuals throughout the Northeast Kingdom (NEK). From her personal experience with Caleb, and the ongoing need for a nurse with him at school and an overnight nurse at home, she is inspired to advance this discipline and be an advocate in the NEK. She works with both inpatients and outpatients, with a focus on emergency department patients, community education, and advancing care in primary care clinics.

“I really love bedside care,” Heather said. “Having trouble breathing is a very scary time for people, and they often need someone to understand what they’re going through. I tell them ‘I will not leave you.’” 

The NEK, like many rural areas across the country, posts higher rates of a leading respiratory illness – chronic obstructive pulmonary disease (COPD) – than metropolitan areas. Contributing factors include increased smoking rates, greater exposure to secondhand smoke, less access to smoking cessation programs, and higher rates of poverty and uninsured populations, which lead to greater risk and less access to early diagnosis and treatment. Rural economic sectors, such as agriculture, manufacturing, construction, and mining also expose individuals to bacteria, mold, fungi, dusts, and other particles that could lead to long-term lung issues too.

While such factors exist, Heather believes today’s reality doesn’t need to be the future. Through offering pulmonary rehabilitation, piloting respiratory navigation and self-management programming at primary care clinics, and launching a free support group for those with COPD, Heather is working to reduce risk factors and overcome barriers to treatment and management of COPD and other respiratory illnesses. These initiatives, programs, and interventions could help reduce hospital readmissions for COPD patients, reduce respiratory-related deaths, and improve quality of life.

“At NVRH, we’re improving the support, education, and programs available to help those with respiratory illnesses, specifically COPD,” Heather said. “This includes a one-on-one approach to help recondition individuals to live at their current capacity. What someone was able to do in their twenties or even a year ago may not be realistic anymore. However, we work with each individual to live to their fullest potential at their current capacity.”


That message of empowerment is one Heather carries between work and home. Caleb continues to excel at high school athletics – something that years ago doctors and coaches thought would be too risky to pursue. Through Team IMPACT, he’s been an honorary member of the Dartmouth College Men’s Hockey Team for nearly a decade – receiving locker room passes, game tickets, and regular time to hang out with the players and coaches. He continues to be a solid student and has big dreams for the future, including playing basketball at the collegiate level. Just as she seeks to give patients more control over their lives, the Nelson family is getting a dog this month to serve, long term, as a service dog for Caleb as he strives to become more independent.

“Diagnosis can certainly change the course of one’s life, but it doesn’t have to restrict one’s life. Caleb is proving that, and I work with patients every day who are proving that too,” Heather said.

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