The Cystic Fibrosis Center: A Mission, an Award and a Video
December 03, 2013
Sixteen-year-old Meghan Richardson and five other children featured in the recent "Roar" video—the viral social media sensation produced by CHaD showing the resilience of children dealing with illness—have cystic fibrosis (CF).
Cystic fibrosis is the most common genetic disease in the Caucasian population, with one in every 25 carrying the gene mutation. "Carriers are typically not affected or symptomatic," explains Lynn Feenan RN, MS, Clinical Nurse Specialist in pediatric pulmonology at Dartmouth-Hitchcock, and coordinator for the New Hampshire CF Center. "For a child to have CF, both parents have to be carriers of the gene. There is a one-in-four chance with each pregnancy that they will have a child with the disease."
The inherited chronic disease affects the respiratory and digestive system, causing the body to produce unusually thick, sticky mucus that can lead to life-threatening lung infections and causes problems with absorption of food and nutrients. "One of the main issues we see with young children with CF is failure to thrive," says Feenan. "But, for the first time in the history of this disease, recently released numbers show an increased median life expectancy that has surpassed the age of 40. That's the median, so you have to consider that half the CF population lives beyond that age. We have patients in our center in their 50s."
Dartmouth-Hitchcock's Cystic Fibrosis Center is the only nationally accredited center in New Hampshire, and has served both pediatric and adult patients across the state and in eastern Vermont since 1972. "We see patients in Lebanon and Bedford locations, inpatient and outpatient," says Feenan. "Our interdisciplinary team approach includes not only physicians and nurses, but respiratory and physical therapists, nutritionists and social workers, and child life and genetic specialists." Psychology and psychiatry are integrated in the patient's care as needed.
Recently, the program has received some well-deserved recognition.
In October, the center was presented with the Cystic Fibrosis Foundation Quality Care Award, given to centers that demonstrate "sustained quality improvement work that improved outcomes." One of the criteria for the recognition was that a center "consistently and actively involves patients and families in … improvement efforts."
Nicola J. Felicetti, RN, BS, a CF continuing care manager who works with the patients and families on The Cystic Fibrosis Patient-Family Advisory & Advocacy Council at D-H, says the team's mission has always been "to enhance the medical care and quality of life for those with CF. Through collaborative efforts … we seek to support CF patients and families with compassion, standing together in love as one, in our common struggle against CF."
Every fall the CF center holds a CF Family Education Night for CF families. "It's an opportunity for us to tell them about the past year and the most recent CF news and research," says Feenan. "We share our CF Foundation Registry outcome data with them because it's really their data. We also get a chance to thank them for their involvement. They are vital to the success of our center and outcomes."
Feenan remembers when she first started as a pediatric nurse, how she "fell in love with kids with CF; I was drawn to them and their families. Almost every longtime care provider can identify those patients who just grab your heart and made a difference. We have a great team of people, with collectively over 200 years of wisdom and experience. There's an energy in our team: the dedication of people who want to work with CF patients and their families. They are just amazing people."