Fetal Cystic Fibrosis Program

The Fetal Cystic Fibrosis Program at Children’s Hospital Colorado supports you through all aspects of care before and after birth. We help you plan for delivery, prepare for having a baby with cystic fibrosis (CF), anticipate any related complications and seamlessly transition your baby’s care to our CF team after birth. The program is a collaboration between our Colorado Fetal Care Center and Breathing Institute, which is home to one of the largest and most experienced centers for pediatric cystic fibrosis care in the country.  Thanks to groundbreaking research in CF, we can start treatment for babies before they are even born. This means some pregnant people may be able to take medication to prevent severe intestinal complications due to CF in their babies.

About the Fetal Cystic Fibrosis Program

Our fetal CF program brings together the expertise of maternal fetal medicine doctors and CF specialists to offer comprehensive care options before birth for babies with CF.

Who we care for:

• If you are pregnant and your baby has been diagnosed with CF
• If your baby had single gene non-invasive prenatal testing (sgNIPT) that identified a high risk for CF
• If you’ve had a prenatal ultrasound indicating concerns for meconium ileus in your baby (bowel obstruction that is characterized by bright, dilated intestines on prenatal ultrasound)

If you have CF or are a cystic fibrosis carrier, but your partner has not undergone CF genetic testing, please ask your current provider about CF carrier testing before reaching out to our Program.

What to expect from prenatal cystic fibrosis care

Interdisciplinary team consultation

Your care starts by meeting experts from our Colorado Fetal Care Center and Breathing Institute. If possible, we schedule appointments so you can meet both teams in one day. They will offer a consultation based on your specific situation, determine if we need more testing and discuss if prenatal treatment could help your baby. The teams can also walk you through the risks and benefits of pursuing prenatal treatment and consider insurance options.

Select a cystic fibrosis treatment option

Prenatal care focuses on a treatment called cystic fibrosis transmembrane conductance regulator (CFTR) modular therapy. These oral drugs target the underlying cause of CF rather than just the symptoms. This therapy has been lifechanging for people living with CF. We’re now using it to provide the same benefits to babies with CF before they are even born, especially those with signs of meconium ileus during pregnancy.

Supporting you through pregnancy — here or at home

Our team can help determine if this prenatal care is right for you and your family and walk you through your care plan. In most cases, our Colorado Fetal Care Center can partner with your local OB/GYN provider so you can receive this treatment and return to your home doctor throughout the rest of your pregnancy.

Seamless transition to the Breathing Institute after birth

Pregnant people with babies who have a high risk of bowel obstruction (meconium ileus) can deliver in our dedicated labor and delivery unit at Children’s Colorado, where your baby can receive immediate specialized care from our neonatology team in consultation with our CF specialists. Upon going home, your baby’s care seamlessly transitions over to the Breathing Institute where they continue to collaborate on your baby’s next steps for CF care.

What’s the benefit of prenatal care for cystic fibrosis?

Cystic fibrosis is a genetic disorder that impacts the lungs, digestive tract and other organs in the body. One of the main concerns for babies diagnosed with CF during pregnancy is the risk of a bowel obstruction called meconium ileus that can require surgery immediately after birth. If we give CFTR modular therapy to pregnant parents early enough in pregnancy, it shows promising results in preventing and treating this bowel obstruction before birth. This lowers the chances that your baby will need surgery after birth and increases the possibility of having a typical newborn hospital stay. If prenatal medication treatment is not right for you or your baby, knowing about a CF diagnosis can help plan delivery and early treatment after birth.

Why choose Children’s Hospital Colorado for prenatal cystic fibrosis care

Our specialists have been at the forefront of research efforts for CFTR modulator therapies for years, helping to prove the safety and effectiveness of these medicines in young children. Now, those same specialists are collaborating closely with our maternal fetal medicine doctors to help families start treating the complications of CF before a baby is born. This innovative approach brings together experts from both groups to make an incredible impact on the lives of those with CF as early as possible. It also gives your family access to prenatal treatment and expertise that’s not available at many children's hospitals in the country.

Contact the Fetal Cystic Fibrosis Program

To ask questions, request care or refer a patient to our program, please call 720-777-4463.

Frequently asked questions about prenatal cystic fibrosis care

If I have cystic fibrosis, does that mean my child will also have CF?

No, having CF yourself does not guarantee your child will also have CF. Both parents need to either have the condition or be a carrier of CF for your child to have a chance of having CF. If both parents are carriers, your child has a 25% chance of having CF. If you have CF and your partner is a carrier, your child has a 50% chance of having CF. Diagnostic testing through your OB/GYN or the Colorado Fetal Care Center can confirm a diagnosis.

Is it safe to get pregnant if I have CF?

Yes, it is often safe to get pregnant if you have CF. Outcomes today are far better than in the past, especially in pregnant people being treated with CFTR modulator therapies. Safety depends on lung health, nutrition, complications (like diabetes) and close care by an experienced CF care team.

I just found out I’m a carrier of CF. What’s next?

If you just found out you are a carrier of CF, the next step is your partner getting a carrier screening test, preferably through complete testing of the CF gene. If your partner is a carrier, diagnostic testing is necessary to determine whether your baby has CF.

Is CFTR modular therapy safe?

CFTR modular therapies have been proven to be safe for people with CF through nearly two decades of research and clinical trials. These treatments are a major breakthrough in CF care, significantly improving survival and quality of life. The type of CF gene variant that a person has determines if a CFTR modulator may help and which CFTR modulator is best. One CFTR modulator therapy is approved for use in infants as young as 1 month of age while other CFTR modulator therapies are approved down to 1 to 2 years of age.

Now, doctors across the country are starting to prescribe these therapies for off-label use after seeing promising results for babies during pregnancy. Off-label use refers to using an FDA-approved medication for a population, purpose or dosage that has not officially been approved by the FDA. This use is considered off-label since CFTR modulator therapies have not been tested in pregnant people enrolled in clinical trials. However, a large observational study in pregnant people shows reassuring early results that use during pregnancy is likely safe and helpful in reducing the chance of bowel obstruction. Our care teams will review the risks and benefits of these therapies before you decide what is best for you and your family.

Can you take Trikafta while pregnant?

Trikafta is a commonly prescribed CFTR modulator therapy, and early research suggests it is safe for pregnant parents and helpful for babies diagnosed with CF before birth. Our experts are studying the effects of taking CFTR modulators during pregnancy. We consider the potential benefits with the known and potential side effects of CF modulator therapy when deciding whether to recommend fetal therapy.

Will insurance cover CFTR modular therapy?

It depends. These medications are expensive and not all insurance companies will cover the cost of these medications for off-label use. Our care teams will work with your insurance companies and submit documentation explaining the need for these medications.

Will I have to switch all my prenatal care to the Colorado Fetal Care Center?

Not necessarily. At the Colorado Fetal Care Center, we can partner closely with your home OB/GYN providers to keep you close to home. Our team can advise if this will be an option for your family based on your situation and walk you through what to expect.