7 Tips for Managing Your Pregnancy With Cystic Fibrosis

How to plan your prenatal care and treatment if you have cystic fibrosis

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If you have cystic fibrosis (CF) and are looking to get pregnant, it's important to know that there are women living with CF who have uncomplicated pregnancies and deliver healthy babies. To improve your chances of having a healthy pregnancy, it is important to plan your pregnancy and work with your doctor to monitor you and your baby's health along the way.

Before you get pregnant, you should have good nutritional status, be at your target weight, and have at least 40 percent lung function.

Before you get pregnant, your partner should undergo genetic testing to determine if he carries the gene for cystic fibrosis. If your partner carries the gene, you have a 50 percent chance of having a child with cystic fibrosis. If your partner does not carry the gene, your child will not have the condition. 

To ensure your pregnancy is as smooth and worry-free as possible, doctors recommend doing the following:

1. Maintain Adequate Nutrition

Your body's nutrition demands increase during pregnancy. To meet these demands, you will probably need to take supplements, such as nutrition shakes, to ensure your body gets the calories it needs. If you are unable to get the nutrition you need from foods and supplements, you may have to go to the hospital to get intravenous nutrition, called total parenteral nutrition (TPN), through a long-term IV known as a central line.

2. Fight Respiratory Infections Aggressively

Respiratory infections should be treated with antibiotics as soon as the first symptom appears.

Infections can quickly get out of hand if you have CF and can reduce the amount of oxygen delivered to your body. Low oxygen isn't just a problem for you, it can also harm your baby since he or she is counting on you to meet their oxygen needs.

3. Continue Chest Physiotherapy (CPT)

Chest physiotherapy is an important part of your daily treatment and must be done even when you are pregnant.

When performed properly, it will not harm your baby.

4. Continue Your CF Medications

Most oral and inhaled CF-related medications are safe to take during pregnancy. Discuss any medications you may be taking with your CF doctor and obstetrician. By reviewing your ​medication list with your medical team, your doctors can determine if any adjustments are needed.

5. Be Prepared for Hospital Admission

You may need to stay in the hospital for a while during your pregnancy for treatment or observation. This is most likely to happen during the last three months of your pregnancy when demands on your body are the highest. 

6. Decide Whether You Want to Breastfeed

If you want to breastfeed your child and your milk contains sufficient amounts of protein and sodium, then you can. If you do choose to breastfeed, you will need to meet with your nutritionist to develop a plan that will provide enough extra calories for you and your baby.

7. Plan for the Future

Despite advances in treatment, cystic fibrosis can significantly shorten your life. The average life expectancy for people with CF in the United States is about 40 years. It is unpleasant to think about the possibility of not being able to raise your child to adulthood, but it is a possibility you should consider.

You should discuss this possibility with your partner and begin making plans for your child's care as soon as possible. 

In addition to using medications and therapies to manage your disease, you can also consider getting a lung transplant. Not everybody with CF qualifies for a transplant, but those that do may be able to lengthen their lives. A lung transplant is risky, but it can offer you a chance to improve your health and extend your life. So far, more than 1600 CF patients have received lung transplants. Approximately 150 to 200 people with cystic fibrosis have received a lung transplant each year since 2007.

 Most of them were still living one year later and about half of them were doing well five years after the transplant.

Sources

  • Calderwood, C. and Nelson-Piercy, C. “Asthma and Cystic Fibrosis in Pregnancy”. Women’s Health Medicine. 2005. 2: 29-32
  • Cheng E.Y., Goss C.H., McKone, E.F., Galic V., Debley C.K., Tonelli, M.R. and Aitken M.L. “Aggressive Prenatal Care Results in Successful Fetal Outcomes in CF Women.” 2006 Journal of Cystic Fibrosis 5:85 – 91.
  • Cystic Fibrosis Foundation. About Cystic Fibrosis. 2016.

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