Myth #3: Men with CF are Sterile

Fact: Men with CF are not sterile. 2% of men with CF can father children naturally without the assistance of an IVF (in vitro fertilization) clinic. In the remaining 98% of men with CF, congenital bilateral absence of the vas deferens (CBAVD) is a relatively frequent cause of male infertility.

It is important to note that men with CBAVD are not, as was previously believed, sterile. They produce sperm except the sperm have nowhere to go because the pathway to release them (i.e., the vas deferens) is absent. These sperm ducts are not blocked with mucus; they are completely absent.

CBAVD may not necessarily be a sign of CF, but rather, is a co-occurring disease in patients with more mild mutations of the CF gene. Some of the less common mutations of the CF gene can also result in CBAVD.

Men with CF who have CBAVD can still father children. Family planning options that use their sperm rely on assisted reproductive technology (ART).

Fertility clinics specializing in a process called MESA (micro-surgical epididymal sperm aspiration) can assist a couple who wish to have children naturally. The MESA process is performed in conjunction with two other procedures in which the sperm are injected directly into an egg. The first is called ICSI (intracytoplasmic sperm injection). Once fertilization has taken place, the embryo is then inserted into the womb.

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For more information about family planning when cystic fibrosis is a concern, please visit the following site:

FAQs About CF and Family Planning

The Choice for Children

For decades women with cystic fibrosis were told not only that they shouldn’t expect to have children, but that they possibly couldn’t even withstand a full term pregnancy. Much has changed in recent years, particularly in regard to the mean survival age of patients with CF being nearly 37 years. Even so, the choice for children is a matter that weighs heavily on the hearts and minds of couples with cystic fibrosis.

Some women with CF feel very strongly about bearing biological children. This decision is just one of a myriad of difficult ones that adults with CF face. Discussing these things with the CF specialists, not to mention a potential spouse, should take place frequently and candidly. Matters of family planning and contraception are best not left to chance. Depending on a couple’s moral or religious convictions, discussions with their clergy or other leader in their religious community may help the decision process.

The experiences and situations of families in which women with CF are becoming mothers are every bit as diverse as the families themselves.

Couples who decide not to have biological children or even to adopt, face just as many emotional challenges as their parenting peers. Coming to terms with the limitations of a couple’s physical, mental, and emotional resources takes a great deal of introspection and self-awareness. One of the most important things to keep in mind is that there is such a thing as a two person family.

Men with cystic fibrosis are up against a different challenge when it comes to fatherhood. Many cannot father a child without medical intervention, and may need to consider different alternatives with their wives.

People with cystic fibrosis carry a great deal of weight upon their shoulders when they consider the biological ramifications of bearing children. There are those who believe it is simply unethical to produce children who will have a high likelihood of testing positive for cystic fibrosis, or will undoubtedly be carriers of the deadly gene. Others believe that by curtailing reproduction, God is affronted.

No matter which decision a couple with cystic fibrosis makes, friends, family, and even the CF team, should respond with grace and respect. Living well with cystic fibrosis requires positive input and support from many sources, all of which promotes better quality of life.

Adoption and Cystic Fibrosis

Today's Q&A is courtesy of Laura Christianson, author of The Adoption Decision and The Adoption Network.

Q. If I have a chronic medical condition, will it exclude me from being eligible to adopt a child?

A. Not necessarily. While adoption professionals do evaluate the health of the prospective adoptive parent(s), their main concern is whether a person's health issues will interfere with or prevent that person from being an effective parent.

If you have a chronic medical challenge and want to adopt, it's important to share openly and honestly with your adoption social worker, and explain the ways in which you are being proactive about managing your health issues. Adoption social workers aren't looking for excuses to turn prospective parents down; they are looking ways to say "yes."

I know several adoptive parents who have chronic medical conditions—they often adopt a child who has the same condition. Adoption social workers are delighted when this happens, because children with medical issues are considered "hard-to-place." When a parent adopts a child who has the same medical challenge, the child often receives the best treatment possible because the parent knows exactly what the child needs.

Laura is a freelance journalist specializing in adoption-related issues. She is the author of The Adoption Decision: 15 Things You Want to Know Before Adopting and The Adoption Network: Your Guide to Starting a Support System.

Her Exploring Adoption blog received Forbes magazine's 'Best of the Web' rating. Laura has written numerous general-interest features and essays for national and regional publications. She speaks regularly at writers' conferences and other events.

Pregnancy Risks

One of the most important things that women with CF should consider regarding pregnancy, is their overall health. Pregnancy, even in healthy women, can pose serious health risks. Women with CF who have mild forms of the disease as indicated by high FEV1 and excellent nutritional status, are better suited to carry a pregnancy to term. Additionally, some of the maintenance medications required to keep CF exacerbations from occurring may be harmful to a growing fetus and must be forgone during pregnancy.

As cystic fibrosis patients are surviving well into adulthood, many are concerned about the aspects of family planning. The following is an excerpt from an article discussing the complications and risks of pregnancy in cystic fibrosis.

Mothers with FEV1 above 80% and no Burkholderia cepacia infection have better outcomes, fewer operative and instrumental deliveries, fewer preterm infants, and fewer neonatal complications than mothers with more serious disease.

Most adults with CF are aware of their shortened life expectancy and the implications of this for parenting. Such issues as long-term plans for children if the mother dies should be addressed.

Read the full article here: Mother Risk Update: CF and Pregnancy

According to the Cystic Fibrosis Foundation 2005 Patient Registry Report, 196 total pregnancies were recorded. However, fewer than 5 live births are recorded. A study conducted in the UK and published in the August, 2001 issue of Thorax states the following:

It has been suggested that women with lung disease may be unable to meet the demands of pregnancy and find their disease adversely affected and be at increased risk of complications.The pregnant group had a significant decrease in both %FEV₁ and %FVC during pregnancy but the rate of decline was equal to the controls at 1 and 2 years thereafter and hospitalisation rates were similar. However, there was a significant reduction in the Brasfield radiographic score in the pregnant group and one mother died 6 months postpartum. Although the group means were not significantly different, in two cases there was a significant deterioration out of keeping with their prepregnant status and the authors concluded that certain individuals were adversely affected by pregnancy.

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Additional information

Pregnancy and Fertility in CF
The Effect of Pregnancy and Survival in CF
Woman With End-Stage Respiratory Failure Gives Birth
Study Shows Drop in FEV1 During Pregnancy