Pregnancyas more women with CF are becoming pregnant, they face complicated decisions about whether and how to navigate the process
CFReSHC CF-SRH Resource Guide by Patients for Providers and Patients
In this section:
- Priority Questions
- Preparing for Pregnancy
- Genetic Counseling
- During Pregnancy
- Pregnancy Loss
- Labor and Delivery
- Social Support
- Maintaining Health
- Emotional Health
- Patient Perspective
- Peer-to-Peer Advice
- Resource Links
- Works Cited
The number of pregnancies and successful deliveries among women with CF continues to rise as women with cystic fibrosis live longer lives, and as scientific advances improve their health and quality of life. Because of the inherent risks of pregnancy, women with CF should ideally undergo pre-pregnancy planning with their CF clinic 3–6 months in advance of conception to help guide them through this process. CF clinic providers can advise women on pregnancy health risks and the potential for complications, and then make referrals to an experienced OB/GYN, maternal-fetal medicine specialist, and/or genetic counselor.
With appropriate planning and monitoring in place, maternal and fetal outcomes for women with CF are generally positive . While studies evaluating the safety and health outcomes of pregnancy in women with CF are limited, extant findings indicate that pregnancy does not typically lead to a decline in health [2, 3]. However some studies do find that women with CF who get pregnant may experience a long-term acceleration in lung function decline, or an increase in pulmonary exacerbations [4-6].
Source: Cystic Fibrosis Foundation Patient Registry, 2018
- What are your reproductive goals?
- When planning for pregnancy/during pregnancy:
- How do you feel about your delivery plan, and do you have the information you need about the different possible outcomes?
- What birth control method would you like to use once you have your baby?
- Can you describe your support system? Who could help you balance childcare with treatments?
- During and after pregnancy:
- How are YOU (not baby) doing emotionally/mentally?
- Have you experienced any changes to your vaginal health or to your pelvic floor function?
- Recommendation: Have conversations about CF-specific needs like medications, maintaining airway clearance, and how to modify routine(s) while caring for a baby and potentially breastfeeding.
- Can I put together a written care plan for you to share with your OB-GYN or MFM to outline what your CF care needs might be during labor and delivery?
- What are the risks to my health if I opt to get pregnant? How do you feel my health will be impacted if I get pregnant?
- Would you support my decision to stay on (or discontinue) my CFTR modulator during pregnancy?
- Can we review my med list and come up with a plan for what medications I need to change before and/or during pregnancy and what we’d do to treat a pulmonary exacerbation?
Click Here for additional questions for patient to ask their provider.
Preparing for Pregnancy
The decision to build a family via pregnancy often requires women with CF to consider factors such as fertility, current health status, potential for complications, medication safety, fetal outcomes, and the prospect of managing parenthood with a chronic illness [see the Parenthood chapter in this guide for more information] .
Ultimately, the final decision to pursue pregnancy rests with the patient. However, three clinical parameters that can help ensure the best outcome for mother and baby include:
- Stable FEV1 of 50% or higher
- BMI 22 kg/m2 or higher
- Well-controlled blood sugar [8,9]
Among these factors, lung function may be the most important . However, pulmonary hypertension and cor pulmonale (right-sided heart failure due to pulmonary disease) are considered contraindications to pregnancy so consultation with a cardiologist may be needed to assess the patient . Additionally, CF care teams may identify other specific risk factors to consider before determining whether pregnancy is advisable for a given patient.
If both provider and patient determine that pregnancy is not the best decision for her, there are other family-building options to consider, including surrogacy, adoption, fostering, or deciding not to have children [see the Family Building chapter].
When planning for pregnancy, females with CF can work with their CF care team and OB/GYN to review their medications to determine the risks and benefits of each. Some females temporarily discontinue or change doses of particular medications during pregnancy. Other medications may be placed on hold just for specific trimesters or during breastfeeding. The Journal of Cystic Fibrosis provides a list of the most common CF medications and their safety profile for each trimester of pregnancy and during breastfeeding .
Modulators, Pregnancy, and Breastfeeding
A question for many women with CF regards the safety of taking CFTR modulators during pregnancy and while breastfeeding. This is especially pertinent as modulators are reportedly increasing planned, unexpected, or unplanned pregnancies within the CF female population [see the (In)Fertility chapter]. While there is little research on modulator safety during pregnancy, and none so far on Trikafta™, preliminary research in the US, UK, and Israel suggests that ivacaftor, lumacaftor, and tezacaftor are generally well-tolerated during pregnancy, with no reported, related complications to the infants . Some women ceased taking modulators during pregnancy only to experience a decline in health and a need to resume treatment later in pregnancy.
CF is an autosomal recessive disorder, which means a person will only develop CF if they inherit a faulty copy of the CFTR gene from each parent . If a woman with CF’s partner does not carry a CFTR gene mutation, her child will be a carrier but will not have CF. If her partner does carry a mutation, there is a 50% chance the child will have CF .
There are more than 1,900 CFTR mutations, but some screenings only test for the most common mutations. Genomic sequencing is more comprehensive than common screenings. A provider may order it for better accuracy. Women and their partners should ask questions to understand the particular tests the provider orders if they undergo genetic and prenatal testing. They should also find out whether insurance will cover these testing options and include those expenses when calculating pregnancy costs.
Unfortunately, there is limited information on current views about prenatal testing and genetic transmission among women with CF. For instance, in their systematic review, Gage et al cite two studies that highlight women’s concern about passing on CF genetic mutations as a key factor in their pregnancy decisions; knowing the risk of having a child with CF was a paramount concern. But these studies are either dated or have a very small sample size [12-14]. When planning for pregnancy, a CF specialist can refer the women with CF to a genetic counselor to provide guidance. S/he/they can also order carrier testing for the patient’s partner.
Pregnancy and Transplant
Pregnancy after lung transplantation is considered a high risk endeavor . Experts recommend planning pregnancy under these circumstances well in advance. The transplant team and a high-risk OB/GYN should also closely monitor the patient. The CF Foundation recommends women with CF avoid getting pregnant for the first 2-3 years following transplant. Care teams often emphasize the importance of contraception and may recommend a long-acting reversible method throughout the transplant process.
Post-transplant, common risks of pregnancy to the mother include: organ rejection, hypertension, renal complications, preeclampsia, and gestational diabetes due to immunosuppressive medications. Pregnancy post-transplant also carries an increased risk of miscarriage along with pre-term delivery and low birth weight.
Pregnant women with CF may be more likely than women without CF to experience certain symptoms and complications. Pregnancies in women with CF are often considered “high risk,” so care by a high risk OB/GYN or a maternal fetal medicine (MFM) specialist is recommended . A woman should work with her CF care team and her OB/GYN to determine a plan to monitor her. Together, the patient and her care teams may also discuss and confirm which medications or treatments may need to be changed during pregnancy, like certain antibiotics or types of vitamins, and the use of diagnostic treatments such as chest x-rays.
Like many pregnant women, those with CF may experience typical pregnancy symptoms, like nausea and vomiting, fatigue, and shortness of breath. But there are also CF-specific concerns during pregnancy, which can include:
- Hemoptysis: Anecdotal evidence in the community, along with small studies, indicates that hemoptysis is a more frequent concern for women with CF during pregnancy than when they are not pregnant. Hormonal changes, increased blood volume (by 30-50% during pregnancy), and abnormal bronchial vessel development could potentially cause hemoptysis [6,13].
- Constipation: Many women experience constipation during pregnancy due to hormonal changes and in some cases, increased iron in prenatal vitamins.14 Constipation during pregnancy can be especially pronounced for women with CF who have a history of constipation or distal intestinal obstructive syndrome (DIOS) . Constipation can be managed with stool softeners, laxatives, physical activity, and proper toilet positioning.
- Pulmonary Health: During pregnancy, the diaphragm rises about 4 centimeters, and the function residual capacity and residual volume of the lungs decreases by 15-20% at term. These changes may put an additional strain on women with CF, and could increase the risk of shortness of breath or pulmonary exacerbation during pregnancy . Due to medication safety concerns, women may have fewer or different options to treat a pulmonary exacerbation. Many women with CF are advised to keep up pulmonary physical therapy and exercise routines throughout pregnancy.
- CFRD and Gestational Diabetes: Women with CF, whether or not they ordinarily have CFRD, are at an increased risk for developing gestational diabetes, as people with CF often cannot produce extra insulin to compensate for the insulin resistance that develops in pregnancy [1,8]. Pregnant women with CF who do have CFRD will likely need to undergo an oral glucose tolerance test earlier than the general population (between 12 and 16 weeks gestation, and then again closer to 24-28 weeks gestation) . Managing blood sugar during pregnancy is very important and may require a woman to use insulin.
- Hypertension: Women with CF may be at an increased risk of hypertension during pregnancy, so they should monitor their blood pressure and discuss their numbers with care teams .
- Nutrition: Providers should monitor women with CF to ensure she has sufficient weight gain.
Pregnancy Loss & Pregnancy Termination
Pregnancy Loss & Pregnancy Termination
Existing research indicates that the rate of miscarriage in pre-transplant women with CF is either the same, or very slightly elevated, as compared to the general population . Women who have undergone lung transplant (for cystic fibrosis or other reasons) have a higher rate of miscarriage compared to women in the general population who have not had lung transplants . The emotional impact of miscarriage may be heightened in women with CF due to prior or ongoing mental health concerns related to having a chronic illness, fears about infertility, and familial or societal pressures to have children.
Approximately half of all pregnancies among women with CF are unplanned/unexpected; this may be increasing with the use of CFTR modulators . Some women may choose to terminate an unplanned pregnancy for personal reasons, or for health reasons. Likewise, some women with CF terminate their planned pregnancies because of health concerns for the mother or the fetus. In the first trimester, termination can be done with medications like mifepristone™ and misoprostol™ or by an office uterine aspiration procedure. A dilation and evacuation (D&E) procedure can be used if the pregnancy is more advanced. There are no universal guidelines for providers for when a pregnancy should be terminated due to CF health concerns. The rate of pregnancy termination cited in studies ranges from 0% to 20%, but women likely underreport terminations due to stigma .
Labor & Delivery
Given their medical histories, complex treatment regimens, and increased risk for pregnancy complications, women with CF may devote extra time and attention to planning for labor, delivery, hospitalization, and even packing their hospital bag! Creating a birth plan can help ease anxiety associated with labor and delivery. The plan could include CF-specific considerations that will help doctors and nurses manage labor when treating a woman with CF. When giving birth at a hospital that is not associated with a CF center, it may be helpful to become familiar with the facility prior to giving birth. It is important to understand how labor and delivery can be coordinated with members of the CF team. For example, some facilities do not have access to CF specific medications. These facilities might also not be aware of cross infection protocols if complications occur. It is therefore prudent for the woman with CF to serve as a liaison between the birthing facility and the CF clinic.
While most women with CF have successful pregnancies and deliveries, both providers and patients should consider additional issues. First, some women with CF are at greater risk for preterm delivery and/or cesarean section, particularly those whose FEV1 is below 50-60%, whose health is unstable, or whose diabetes is poorly controlled [1, 9]. Second, overall, an estimated 10-25% of pregnant women with CF deliver early, either spontaneously or induced, due to declining maternal and/or fetal health . Third, babies of mothers with CF are also at an increased risk for fetal growth restriction, particularly if these women have low lung function or require supplemental oxygen . Women with CF should expect their OB/GYN to monitor the size and vitals of the baby closely, especially during the third trimester. Fourth, the use of anesthesia during labor could lead to complications, especially for those with a lower baseline FEV1 . OB/GYN or MFM providers may arrange a consult with an obstetric anesthesiologist to help plan beginning in the second or third trimester. This consultation can provide the prospective mother with CF an opportunity to understand potential complications, assess the risks of anesthesia during labor, and formulate a birthing plan. Fifth, airway clearance during and after labor can be complicated. Generally, it is best to mobilize and resume respiratory treatments as soon as possible. What therapy will be performed, and the timing of treatments, will vary for each woman based on the treatment plan prescribed by the CF care team. Discussing this prior to delivery is crucial to maximize post-delivery lung function. Again, different facilities will have different therapy options; available modalities could impact the need to bring one’s equipment to the hospital from home. Sixth, the use of oxygen during labor and delivery is very common in women with severe pulmonary disease. Pain and anxiety during labor can lead to respiratory distress. Analgesics can help ease some of these symptoms along with bronchodilators, oxygen, or the use of a biPAP machine, especially in prolonged labor . Clearly these are other considerations for a woman with CF based on pulmonary function and potential pulmonary distress.
The Postpartum and the 4th Trimester
The 12-week period following birth is often referred to as the 4th trimester. During this time, new mothers face physical and emotional challenges as they recover from delivery and adjust to life with a newborn.
Recovering from labor and delivery
Women with CF are typically encouraged to resume their normal treatment regimen as soon as possible following delivery. If a woman has a c-section, she may need to adapt her approach to airway clearance and physical activity while recovering.
Women with CF tend to be prone to pelvic floor dysfunction, and the pressure of a fetus during pregnancy and the process of labor and delivery may cause or exacerbate pelvic floor issues [15, 21]. Physicians treating women with CF should work with their patients to proactively address symptoms and make referrals to physical therapy as necessary [see Incontinence Chapter for information about pelvic floor dysfunction].
The breastmilk of women with CF is generally safe and healthy for their babies, given the caveats described below. CF-specific considerations may factor into a woman’s decision on whether to breastfeed, for how long, and whether to supplement with formula:
- Nutrition: In order to maintain their weight, hydration, and milk supply while breastfeeding, women generally need to consume an extra 500 calories per day, and an additional 2 liters of fluids [15,22]. Some women with CF struggle with this.
- Medications: Many medications are excreted into breast milk, and some of these medications may pose risks to the baby’s health. Decisions about which medications are safe to continue may differ from pregnancy. A woman can work with her CF team and consult apps like LactMed to determine the best course of action.
- Prioritizing treatments and rest: Breastfeeding is demanding and some women with CF choose not to breastfeed or supplement breastfeeding with formula in order to ensure they have the time and energy needed to maintain their own health.
Social Support and Mental Health
Caring for a newborn can be exhausting. Because women with CF have demanding treatment regimens and face health challenges, they may find it especially difficult to get enough rest and to establish a new routine. Support from one’s partner, friends, and family members is crucial during this adjustment. Some mothers with CF find that having a child has a positive impact on their treatment adherence; some may experience the opposite, especially during the newborn period [see the Parenthood chapter].
Postpartum depression is not well studied in women with CF. Screening and early intervention are important for maintaining a new mother’s mental health.
Monitoring and Maintaining Health
Depending on health status and any challenges experienced during pregnancy, a CF care team may want to closely monitor lung function, weight, and overall health during the postpartum period. The care team should ideally review and discuss postpartum contraception choices with the patient early in the pregnancy and no later than the third trimester. Given the challenges of pregnancy and caring for a newborn in women with CF, it is recommended to use contraception and avoid becoming pregnant again without proper planning. There are many methods of birth control that are safe to use during the postpartum period, even when breastfeeding [See the Contraception chapter].
Emotional Health and Wellbeing Surrounding Pregnancy
Before, during, and after pregnancy, women with CF may face fears, anxieties, and unresolved questions. The decision to become pregnant, and the impact of pregnancy and delivery, can be challenging both physically and emotionally.
It is important to discuss these feelings with one’s partner and CF care team. It may be helpful to talk to a licenced therapist. In addition, there are a variety of sources available to women with CF through nonprofit organizations, local hospitals/CF clinics and on social media. Common concerns include:
“Having a strong support team has been essential for me. My husband and I share housework and childcare responsibilities equally. We also have family and friends nearby who we can rely on; they’ve helped watch kids, for example, while I have doctor’s appointments, when I’ve been admitted to the hospital, or when I’m not feeling well and need some rest. I also see a therapist to help me manage anxiety, depression, and other aspects of living with a chronic illness. Something one of my therapists told me that I’ll never forget is ‘you can’t serve from an empty vessel.’ It’s important to remember that caring for yourself is a crucial part of caring for your family; sharing tasks equally with your partner may not look like a 50/50 split on the outside. It’s important to discuss your expectations with your partner and openly communicate needs as they arise.”
Peer to Peer Advice
- As soon as you are able, ideally pre-pregnancy, find a maternal fetal medicine specialist, and if possible, one who is familiar with CF.
- Talk to your doctor about the potential risks versus benefits of stopping a modulator during pregnancy, especially since maternal health and pulmonary capacity is so important to maintain.
- Consult with an OB/GYN who specializes in reproductive toxicology so you can better understand how different medications may impact a fetus.
- If you’re borderline CFRD, use a continuous glucose monitor as soon as you become pregnant or even before. It may take awhile for insurance to approve one, so getting one in advance can be helpful.
- Get connected with someone who has been through pregnancy with CF, such as through Facebook groups, the CF Foundation’s peer support program, or a pregnancy support group through Attain Health.
- Take Miralax for constipation during pregnancy, and especially immediately postpartum, as many women become constipated after delivery.
- Know that staying on top of regular self care can be hard during pregnancy, much less complicated CF treatments.
- If you’re on oxygen, your O2 needs may change during pregnancy.
- It may be helpful to keep Tums by your bed to take during the night as needed, if approved by your medical team.
- If you aren’t delivering at the same hospital as your CF care team, make sure there is a mechanism for your CF team to communicate with your OB/GYN or MFM. It can be helpful for your CF care team to document in writing what kind of care you need and the appropriate medications that can be used during labor and delivery.
- Get a baby nurse or invite family or friends to help out a lot during the first couple of weeks postpartum.
- Work with a nutritionist on how to get enough calories, but in a healthy way for yourself and your baby both during pregnancy and postpartum, especially if breastfeeding.
- Have plans but be flexible! Things can change quickly.
- Take your time and do your research. Pregnancy with CF can take planning and research.
- Don’t forget to plan for postpartum contraception while you are pregnant, so that you are prepared even before you give birth, after which life is much more hectic. It is best to discuss this with your CF care team and OB/GYN early in your pregnancy so that you can start contraception right after birth so as to avoid pregnancies that are too closely spaced. Often, birth control can be provided while you are in the hospital after labor and delivery.
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