The Cystic Fibrosis Center at Lurie Children’s has been a Cystic Fibrosis Foundation-accredited cystic fibrosis (CF) care center since 1963. It is the largest cystic fibrosis center in the state of Illinois.
The CF Center is committed to providing excellent, multidisciplinary care to each patient and family; staff members focus on individualized preventive care; active management of lung health and nutrition; and patient and family education.
Mission Statement
The Cystic Fibrosis (CF) Center at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University provides comprehensive proactive care throughout a CF patient’s lifetime. Care decisions are made collaboratively between the patient, family and health care team and are based on the best information available. We continuously assess our practice to provide optimal care and offer access to research, including development and testing of new treatments. Through these strategies we aim to improve the quality and length of life for all individuals affected by CF.
Vision Statement
The Cystic Fibrosis (CF) Center at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University will continue to provide the highest quality clinical care and research. We will strive toward excellence and growth through collaboration within the CF community. We will pursue our goals while ensuring continued distinction in clinical care, quality and research.
Approach
Our experienced pulmonary nurses are available to coordinate your many CF care-related needs. This may include home routines, management of acute illnesses, obtaining and interpreting test results, providing medication information and prescription refills, negotiating adherence with your child, interfacing with school and home care needs. There is a nurse available at each regularly scheduled outpatient visit and by telephone Monday through Friday.
Respiratory Care
The purpose of providing respiratory care is to prevent a decline in lung function. Early treatment of the lungs may include the use of airway clearance techniques (ACT) that mobilize secretions, inhalation therapy to deliver medications to the lungs, early treatment of respiratory illnesses and the use of medications that have proven to be effective in CF. These form the foundation of respiratory care in cystic fibrosis.
Our experienced respiratory therapists teach patients and families airway clearance techniques tailored to individual needs and abilities. This may include chest physical therapy, Flutter®, acapella, the vest and autogenic drainage. The therapists also perform an ongoing assessment because ACT options may change as your child grows older.
Nutrition Care
Optimal CF nutrition helps keep lungs healthy and allows the body to fight infection. Our nutritionists play an active role in the care of our patients. Height, weight and body mass index are reviewed at very visit to assess growth. In addition, the nutritionists review enzymes, gastrointestinal patterns, vitamin supplementation, individual eating habits, mealtime behaviors and sports and school lunch schedules. They collaborate with the patient and family on nutrition strategies and problem solve around obstacles. Our two CF center nutritionists are also available for inpatient care, outpatient visits and interim phone calls. Practical assistance in meeting nutrition goals is provided during clinic visits, by nutrition newsletters and a variety of other resources.
Social Work
All families experience stress when a member has a chronic illness. The CF team social worker is available to assist families in managing this stress by partnering with them to find solutions. The social worker is present at most clinics and is available during the week by phone to provide support, answer questions and make referrals. She also performs routine psycho-social assessments in order to assist the team in providing comprehensive care to the children and families who use our center.
Genetic Counseling
Cystic fibrosis is an inherited disease whereby an individual inherits two abnormal CF genes, one from each parent. When an individual is known to have CF, it is possible that other family members could be affected by CF or be a carrier (someone who inherits one abnormal gene from just one parent). Genetic counseling is helpful in understanding how CF is inherited, what the chances are that another child born from the same parents could also have the disease (or be a carrier), what the recommendations are for CF carrier testing for spouses, and fertility options.
A genetic counselor meets with each new CF family and is also available for consultation during regularly scheduled outpatient visits. Please notify the CF Center if you wish to see the genetic counselor.
Testing & Diagnosis
Children with cystic fibrosis inherit the disease from their parents. This happens when each parent has a copy of an altered CF gene. Today, there are ways to test parents to determine whether they are CF carriers. Infants are also screened for CF soon after birth. Learn more about the methods used for screening:
Ongoing Care & Health Maintenance
Children with CF need to have their condition managed on an ongoing basis. Learn about important components of your child's care.
Research
The Cystic Fibrosis Center at Lurie Children's participates in clinical research efforts to broaden the understanding of cystic fibrosis and help develop new therapies. Discovering and developing new and more effective treatments is critical in improving the health and life of individuals with cystic fibrosis.
Our Team
Our CF Center physicians are board-certified in pediatric pulmonary medicine and have received training in cystic fibrosis care. They coordinate the outpatient care of children with the CF team and rotate weeks supervising (or directing) the care of patients that are hospitalized. Our physicians are actively involved in clinical research. There is always a pulmonary physician on call, 24 hours a day, seven days a week.
Maria L. Dowell, MD
Director, Cystic Fibrosis Center; Attending Physician, Pulmonary Medicine
John B. Palla, MD
Associate Director, Cystic Fibrosis Center; Attending Physician, Pulmonary Medicine
Kathleen L. Boyne, MD
Attending Physician, Pulmonary Medicine
Susanna McColley, MD
Attending Physician, Pulmonary Medicine
Our team also includes:
- Advanced practice nurses
- Genetic counselors
- Nurses
- Nutritionists
- Respiratory therapists
- Social workers
We work closely with gastroenterologists, allergists, pediatric surgeons, physical therapists, endocrinologists, hepatologists and ear, nose and throat specialists. We also have an active liver transplant program with leading experts in the Division of Gastroenterology, Hepatology and Nutrition.
Make an Appointment
We offer several scheduling options for your child's care needs.
Our Locations
Ann & Robert H. Lurie Children's Hospital of Chicago
225 E. Chicago Ave.Chicago, Illinois 60611
312.227.4000
Lurie Children's Hospital Outpatient Center in Arlington Heights
Busse Center for Specialty Medicine880 W. Central Rd, Ste 6400
Arlington Heights, Illinois 60005
312.227.5410
Lurie Children's Hospital Outpatient Center in Northbrook
1131 Techny RoadNorthbrook, Illinois 60062
312.227.7600
Lurie Children's Hospital Outpatient Center in Westchester
Surgical Treatment Center2301 Enterprise Drive
Westchester, Illinois 60154
312.227.7900
Resources & Support
Visit the following helpful and physician-recommended websites to learn more about cystic fibrosis.
- Cystic Fibrosis Foundation
- Cystic Fibrosis Foundation Patient Registry
- National Society of Genetic Counselors
- Cystic Fibrosis Indicator Report: The Cystic Fibrosis Indicator Report provides information on cystic fibrosis, including diagnosis, treatment and health outcomes in the United States. It reports key national and state trends, including demographic information, nutrition and lung health.
Cystic Fibrosis Program News & Stories
First Guideline on Newborn Screening for Cystic Fibrosis Calls for Changes in Practice to Improve Outcomes
The United States Cystic Fibrosis Foundation released the first guideline on newborn screening for cystic fibrosis, in order to improve timely detection of CF in infants from all racial and ethnic backgrounds.
Research Uncovers Inequities in Diagnosis of Infants with Cystic Fibrosis
Research from Lurie Children's Dr. Susanna McColley and colleagues found that too many infants receive a delayed diagnosis of cystic fibrosis (CF), which leads to worse outcomes, and infants who are Black, Hispanic, Asian, or multiracial are particularly impacted.
Lurie Children’s Campaign Urges Parents to Follow Up Right Away if Newborn Screening Results are Abnormal
Lurie Children’s launched a newborn screening awareness campaign with signage on public transit and billboards across Chicago advocating for timely follow-up from parents which can improve outcomes for children.
All Infants, Regardless of Race or Ethnicity, Can Have Cystic Fibrosis
A new report on cystic fibrosis from Lurie Children’s, in partnership with the Cystic Fibrosis Foundation, highlights the need to improve awareness and practice to ensure that all babies with CF are diagnosed as soon as possible.
Survey of U.S. Parents Highlights Need for More Awareness About Newborn Screening, Cystic Fibrosis and What to Do if Results are Abnormal
A national survey led by Lurie Children’s found that parents have insufficient knowledge of newborn screening in general and of cystic fibrosis (CF) in particular.
New study findings underscore the importance of timely newborn screenings in early care for cystic fibrosis
Late diagnosis in the era of universal newborn screening negatively effects short- and long-term growth and health outcomes in infants with cystic fibrosis.
Philanthropy
Your support is vital in helping us continue to make a difference in the lives of patients and families. Lurie Children's relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation at foundation@luriechildrens.org or call 312.227.7500.