Services

Cystic Fibrosis Nurse Coordinator

The Cystic Fibrosis (CF) Nurse Coordinator is responsible for coordination of the entire CF Program, and will work with you in the following capacities:

• managing the CF clinic schedule and appointments
• assigning your visits with the CF team members
• scheduling tests and procedures
• education
• conducting pre- and post-clinic conferences

In addition to the roles played related directly to you and your families care, the coordinator also provides education to schools, day care, nursing, medical students, and other health care providers and serves as the research coordinator for several research studies.

Respiratory Therapist

A Respiratory Therapist (RT) is trained to look at lung health.  RT’s make suggestions to the physician about what is available and teach patients, their families and others (i.e. day care providers, school nurses) how to perform proper airway clearance. When in clinic an RT will collect sputum samples, perform Pulmonary Function Tests (PFT’s), and teach and review airway clearance.

Registered Dietician

At each clinic visit, the Clinic Dietitian checks weight and height to be sure your child is growing properly. 

The dietician is also available to work with patients and families to improve food choices for better growth and overall health when necessary, and to help parents work with picky eaters and other nutrition challenges related to their CF and growth.
 
Social Work

Social workers help to improve the patients and their family’s quality of life by offering information, resources, and support services.  Working with the medical team, patient and family, the social worker also helps plan the care and treatment of patients.

Child Life Specialist

The health care environment brings with it many new and sometimes stressful experiences for children, teenagers, and families.  Child Life staff work with patients and their families to help them understand and cope with these experiences.  We provide opportunities for children to grow and develop normally while in the hospital, we prepare patients and families for procedures, and we help them cope with all aspects of their health care experiences.

Genetic Counselor

A genetic counselor helps you understand how cystic fibrosis runs in families.  The counselor also arranges genetic testing and interprets these tests for you and your family.

Newborn Screening

Newborn screening (NBS) for CF is now being routinely performed in many states.  The CF Foundation has recommended that this occur in all states.  Within the next several months, NBS will hopefully begin in Vermont.  The test involves a small blood sample taken from a heel stick shortly after birth.  The sample is already used to test for other congenital metabolic disorders.

Many infants with CF have evidence of injury to the pancreas.  The NBS test measures an immunoreactive trypsinogen (IRT) level which, when elevated, may be a sign of this injury.  Babies with high IRT levels then have their blood sample tested for a limited number of CF mutations.  Depending on the level, they are referred for a sweat test at an accredited CF Center and further evaluation if necessary.  Many infants with elevated IRT levels, however, do not have CF. Therefore, it is important that the other testing occur.  Even though the IRT level is a good NBS for CF, there are some infants who will be missed with this test.


Patient/Family Advisory

Vermont Children's Hospital at Fletcher Allen has a Patient and Family Advisory, allowing us to hear ideas for improvement directly from those we serve.  If you are interested in participating, or learning more about the advisory please call 802-847-8600