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.