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.

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