Mollee Hallet taps her finger at the photo on her cell phone – showing a beautiful salmon-colored strapless dress with tiers of organza billowing to the floor. She’s excited to wear the gown to her high school prom next month. “It’ll show off my neck,” said Mollee, smiling. It’s a bold move for the 18-year-old from Andover, Kan. For the first time in her life, Mollee won’t have a tracheostomy tube.
Mollee was born with Chronic Central Hypoventilation Syndrome (CCHS). Diagnosed at four weeks old, the high-risk newborn was hospitalized for four months. Early on, Mollee relied on a trach and ventilator to keep her alive.
By the time she was six years old, Mollee still had the trach, but was dependent only on the vent at night. Mollee has a mild form of CCHS where she breathes normally while awake, but hypoventilates during sleep. Her breathing becomes too slow or shallow to meet her body’s needs. “Mollee’s been hospitalized so much,” said her mother, Dusty. She’s nearly died a few times, too. But Mollee has a spunky attitude. “It’s what saved her,” said Dusty.
Throughout her childhood, Mollee wasn’t treated any differently. She actively participated in years of dance classes and loves playing softball. Mollee describes herself as strong, open-minded and independent. But the constant presence of the vent/trach duo has inhibited her lifestyle. “Some of my old vents weighed as much as 50 pounds,” said Mollee. Family vacations required bringing two vents – one for a backup. Sleepovers with friends had to be thought out well in advance. And, swimming was out of the question.
Frances Kleffner, a respiratory therapist and Mollee’s grandmother, researched the NeuRx DPS® and found Madonna. She felt it could make a dramatic difference in Mollee’s life. The device helps patients with CCHS breathe easier, live longer and in some cases, eliminate their dependence on a ventilator. “I thought Mollee would be a good candidate for it,” said Frances. Her granddaughter had to wait until she was 18 to be evaluated because the DPS implant is non-FDA approved for patients under 18.
Once approved for the pacer surgery, Mollee had mixed feelings. “I was like ‘Okay let’s do it!’” said Mollee, but admits she was apprehensive. Although it may sound strange, she said she is going to miss the trach. “I feel like I’m losing a part of me because I’ve had it most of my life,” said Mollee. “I’m often known as the girl with the thing in her neck.”
On March 6, Mollee elected to have the NeuRx DPS® implanted. The minimally invasive two-hour surgery was performed by Dr. Greg Fitzke with Surgical Associates at Saint Elizabeth Regional Medical Center in Lincoln, Neb. Mollee relied on tunes from country music artist Jason Aldean to calm her nerves. “You’ve just got to believe in yourself and remember the goal,” said Mollee.
Rebecca Wills, MA, BA, CRT-NPS, pulmonary program manager at Madonna Rehabilitation Hospital collaborated with colleagues at Saint Elizabeth’s and Dr. Fitzke to ensure a successful procedure for Mollee. “We’ve had the joy of helping to make a difference in Mollee’s life,” said Rebecca.
A few days after surgery, Mollee returned home to Kansas. Her body needs time to adjust to the implant before she returns to St. Elizabeth’s to participate in a sleep study. Once Mollee is safely sleeping all night, her trach will be removed.
Mollee can’t imagine going somewhere without carting a vent and has trouble visualizing herself without the trach.
It’s definitely going to be life-changing for me.
She’s diving back into school and social activities. First on the list – getting photographed in her beautiful dress at the Andover Central High School prom.
NeuRX Diaphragm Pacing System
The NeuRx DPS™ device, implanted during a minimally invasive surgery, helps individuals breathe easier by conditioning their diaphragm muscle through electrical stimulation. Madonna Rehabilitation Hospital is among a handful of institutions nationwide, and the only Nebraska rehabilitation hospital, that facilitates the DPS™ implantation and provides post-operative rehabilitation when indicated.
Candidates for the NeuRx DPS™ are patients with:
- High level spinal cord injury resulting in dependence on ventilation
- Bilateral intact phrenic nerves below the level of the spinal cord injury
- Individuals with ALS who have phrenic nerve function and documented chronic hypoventilation.
- Individuals with chronic central hypoventilation syndrome (CCHS)
- General good health otherwise
For more information, contact Rebecca Wills at firstname.lastname@example.org.