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The Children’s Mercy Cystic Fibrosis Care Center Team provides expert, family-centered care to infants, children and adolescents living with cystic fibrosis. Our care team includes medical providers, nurses, respiratory therapists, social workers, dietitians and pharmacists who all work together to coordinate care for your child.

The Cystic Fibrosis (CF) Care Center is fully accredited by the Cystic Fibrosis Foundation. More than 250 families from across the Midwest come to Children’s Mercy each year to receive specialized care for their child.

From diagnosing your baby to helping your young adult transition to managing their own care, the Children’s Mercy CF team will be with you every step of the way.

Understanding Cystic Fibrosis


To help you better understand cystic fibrosis, including symptoms, treatments and support for people living with CF, we recommend that you explore the Cystic Fibrosis Foundation's website. The CFF is dedicated to improving the daily lives of people with cystic fibrosis and provides comprehensive information and resources on all aspects of living with or caring for someone with CF.

What to expect

 

Your first visit - diagnosis


Diagnosing cystic fibrosis is a multi-step process. It usually starts with a newborn screening test performed by the state. If the screen is abnormal, infants and children are then referred to a Cystic Fibrosis Foundation-accredited care center like Children’s Mercy for further testing.

When you come for your first appointment, the CF specialist will do a comprehensive examination of your child. We will do a sweat test and genetic testing along with your child’s clinical evaluation.

Although most people are diagnosed with CF by the age of 2, some are diagnosed as older children or as adults. A CF specialist can order a sweat test and recommend additional testing to confirm a CF diagnosis at any age.

Our team approach to care at Children’s Mercy


If your child is diagnosed with CF, you will have regular appointments with a team of specialists who will get to know your family and work closely to coordinate care for your child’s specific needs.

At the Children’s Mercy Cystic Fibrosis Care Center, we take pride in our diverse group of dedicated CF experts and the outstanding care we provide for children with CF. Our care team includes providers, nurses, respiratory therapists, social workers, dietitians and pharmacists.

We have four pediatric pulmonologists and one pediatric nurse practitioner who provide care in CF clinic. Several team members travel to our outreach clinic in Joplin, MO once a month for families who live closer to that location.

Once you have established care in our CF clinic, we encourage you to pick a primary CF provider. That provider partners with a nurse, social worker, and dietitian so a core team of people provide expert care for your child. This approach allows for our team members to develop close, long-term relationships with you and your family.

Ongoing health education at each visit


Your family will come to Children’s Mercy for a comprehensive CF clinic visit approximately every three months. We work hard to streamline your time in the CF clinic while making it a worthwhile and valuable experience.

Our CF Care Center uses a Quarterly Visit Curriculum. This means that during each clinic visit, we choose to focus on a different aspect of CF care:

  • Respiratory Care
  • Nutrition Care
  • Psychosocial Care (mental and emotional health)
  • Annual Review (focusing on medications and overall health)

During these visits, one team member will spend extra time with your family to focus on education in their area of expertise and planning for your child’s upcoming growth and development milestones.

Our goal is to teach your family everything you need to know about CF and how to best manage it. Even if your visit focus is on a different aspect of care, you can always see other team members, such as the dietitian, pharmacist, or social worker, if you need to.

Coordinated care for all your child’s needs


The Children’s Mercy Cystic Fibrosis Care Center has strong collaborations with other specialists that may be important for your child’s care. We have Children’s Mercy specialists who are familiar with CF care in the following areas:

Hepatology (Liver Care)
Otolaryngology (Ear, Nose, and Throat)
Gastroenterology (GI)
Psychology and Psychiatry
Infectious Disease
Endocrinology

Endocrine combined clinic


We partner with our Endocrinology team in a monthly “combination” clinic in which the CF team and the Endocrine team collaborate during one clinic visit. This allows your family to see the CF and Endocrine team both during one appointment.

This increases the collaboration between the CF and Endocrine teams and may ease the burden on your family by reducing the number of appointments and related travel to Children’s Mercy.

Education day


We also offer an annual education day for family members and caregivers of children with CF. This event provides the opportunity to hear from both local and national experts in CF care. It also allows for networking with others in the CF community.

Family members and caregivers of children with CF are encouraged to attend. Adolescents and young adults with CF are encouraged to participate remotely using our telecommunication platforms.

Research that leads to results


The Children’s Mercy Research Institute demonstrates the commitment to ongoing research and innovation at Children’s Mercy. The CF team has several members who regularly participate in research studies aimed at developing new medications and therapies for people living with CF.

On average, one out of every four families in our clinic participates in a research study, which is an excellent participation level. In 2018, we were recognized as the second-highest enrolling CF center in the country.


Is my child a good candidate for a research study?


The CF care team at Children’s Mercy meets weekly to review clinical trial eligibility and potential research study candidates. We know what an impact our patients and families have in the development of new CF therapies and are here to help find the right clinical trial for your child. If you are interested in taking part in research, talk to your CF care team.

More information about current clinical trials is available on the National Institute of Health’s research study database and the Cystic Fibrosis Foundation’s clinical trial finder.

Stories

Cystic Fibrosis and Research: Myah’s Story

Meet Myah, a teen who loves playing soccer and also happens to have cystic fibrosis. Recent clinical trials have helped Myah keep up with her teammates and improve her quality of life through access to new medication and treatment options.

Family support


The Cystic Fibrosis Parent Family Advisory Council works in partnership with the CF Clinic to advocate on behalf of children and families for the best quality care. The council serves as a resource for parents to further influence policies and procedures, enhance communication, and expand education for children and families in both inpatient and outpatient settings.

The PFAC is made up of a motivated group of parents and caregivers focused on sharing their perspective and firsthand knowledge in collaboration with the CF care team.

Cystic Fibrosis Foundation


Many of our families have found incredible support through the Cystic Fibrosis Foundation. The organization helps families understand the condition, navigate the challenges of daily life with CF, and access detailed information about treatment and therapies.