MaineHealth Pediatric Specialty Care Portland and MaineHealth Barbara Bush Children's Hospital (MHBBCH) provide comprehensive care for newborns, children and young adults with cystic fibrosis (CF). Our clinic is part of a nationwide network of care centers accredited by the Cystic Fibrosis Foundation. Being an accredited center means we’ve met rigorous standards for the care we provide.
Helping kids with CF live full and happy lives
Despite the seriousness of their disease, children with cystic fibrosis (CF) can still do the things that most kids do, like go to school and participate in activities with friends. We are here to help children with CF enjoy a good quality of life while taking care of their health.
We are a CF Foundation Therapeutic Development Network (TDN) Center. The TDN is a nationwide network of nearly 80 CF clinical research centers specializing in clinical trials to evaluate the safety and effectiveness of new CF therapies. The TDN is currently involved in trials for gene therapy, protein-assist therapy, anti-infective drugs and other treatments – giving children with CF in Maine and New Hampshire access to the same promising new treatments at any other top CF Center in the country. We notify families of any trial in our clinic that they qualify for to give them the choice to participate in clinical research.
More about our services
The CF Foundation recommends that individuals with CF be seen in clinic at least four times a year. This not only ensures optimal care, but it also gives us the opportunity to:
- Really know our patients as individuals
- Tailor the care we provide to meet their unique needs
- Help them to live full lives
At our weekly CF clinics, the entire care team is available to see each patient. We hold a daily pulmonary clinic for emergency care. Pulmonary nurses are also available to answer questions by phone daily.
Once each year, we’ll perform a comprehensive evaluation and exam. This includes lab tests, lung function tests and a chest x-ray. We’ll review these test results on the day of your child’s appointment. Following each visit, we’ll provide an updated care plan to you and your child’s primary care physician. We also encourage parents to coordinate their child’s vaccinations, routine medical care and non-CF related health issues with their primary care physician.
Our care center data is part of the Cystic Fibrosis Foundation Quality Improvement (QI) initiative, a program designed to increase, promote and share improvements in care throughout the cystic fibrosis care center network. The Foundation also trains care centers in QI and provides tools to improve care and build stronger partnerships between people with CF, families and their care center team.
In accordance with State of Maine recommendations, all infants born in Maine are screened at birth for CF if the family agrees. Genetic counseling is available to parents of infants who screen positive for CF or who are carriers of the CF gene. We work closely with the state newborn screening laboratory to make sure we serve as a resource to these families during the difficult time of the initial CF diagnosis and we strive to see families within 24 hours of a CF diagnosis to answers the families questions and relieve their fears. Learn more about the CF screening process.
If an abnormal screening is found, the sweat test is the standard test for diagnosing CF. The sweat test is a simple and painless procedure that measures the amount of salt in the sweat. A high salt level indicates CF. The CF Foundation recommends that the sweat test be performed at a CF Foundation-accredited care center such as ours which has strict guidelines to ensure accurate results. Genetic testing can also be used as necessary to diagnose CF.
Besides providing expert care for people with CF, we collect data from all our patients the national CF Foundation Patient Registry, which is a rich resource for parents, health care professionals and CF researchers to track the health of people living with CF in the U.S. Our data can be seen on the CF Foundation website.
