Spring 2000 ~ Newsletter

Cystic Fibrosis and Reproduction

   

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A Question And Answer Time On Reproductive Health And Cystic Fibrosis

by Dr. Raymond Lyrene

Reproductive health in persons with CF is a very timely topic.  Improved care has allowed us to witness the aging of the CF population.  It is estimated that by the year 2001 nearly half of the patients with CF will be adults.  These adults now find themselves facing many of the same choices and concerns such as others of their generation who don't have CF - education, careers, marriage, or parenting.
 
How does CF affect male reproduction?
The effect of CF on the reproductive system is well known - virtually all men with CF are infertile (98-99%).   Most men with CF produce normal sperm but the duct that should carry sperm from the testis is not developed.  Currently surgery will not correct this problem.
 
How does CF affect female reproduction?
The exact incidence of infertility in adult females with CF is not known but is thought to be about 20%.  The anatomy of their reproductive tract is perfectly normal, but thick mucus prevents the sperm from fertilizing the egg.  Advanced respiratory disease and poor nutrition also contribute to the decreased fertility.
 
What should prospective parents with CF consider?
Adults with CF who are thinking about starting a family have important issues to consider.  Childbirth imposes long-term responsibility on parents.  No one is guaranteed the opportunity to witness the growth of their children, but parents with CF must face the possibility of a limited life span.  Plans for alternative caregivers should be in place and spouses or partners should be able to accept the prospect of single parenthood.

All adults with CF contemplating a family should also consider genetic counseling.  Any child born to an adult with CF will at least be a carrier.  The risk of having a child with CF is about 2% (1 in 50 births) if the parent is of European descent.  The risk would generally be less for partners of other ethnic backgrounds.  The risk can be reduced if the partner is screened for the CF gene.  Because the clinical genetic screening is imperfect there remains a small chance (about 1 in 700) that the child will be affected even when the partner's carrier test is negative.
 
What is the risk of pregnancy?
In the past, many women with CF were counseled against pregnancy.  Recent information indicates that women with good pulmonary functions and good nutritional status should be able to tolerate pregnancy well.  Not surprisingly, the more severe the underlying disease in the mother, the more difficulties can be anticipated with the pregnancy.  There does appear to be an increased risk of respiratory infections (and a reduction in pulmonary function) for the mother during pregnancy.  Pregnancy does not appear to be a long-term adverse effect to the health of women with CF with mild lung disease.
 
Understandably, women with moderate or severe lung disease or poor nutrition are still discouraged from becoming pregnant because of increased risk to the health of the mother and unborn baby.  Another important exception to this is women with CF who have insulin-dependent diabetes who experience three times the rate of pulmonary function decline when compared to non-diabetic women with CF. 

What steps should be taken once you become pregnant?
An obstetrician who specializes in complicated pregnancy should follow women with CF who become pregnant.  Additionally, the CF physicians should follow them more carefully.
 
Is there any help for men with CF who want to become parents?
There is also help for adult males with CF who wish to become parents.  A relatively new procedure harvests sperm from the testes and injects them into eggs harvested from the female partner.  These fertilized eggs are incubated and several days later transferred to the partner's uterus.  Unfortunately, this procedure is quite expensive and most likely will not be covered by insurance, so most couples will not be able to take advantage of this technology.

Are there alternatives to being biological parents?
Alternatives to having a biological child should also be considered.  For the partners of infertile men, artificial insemination with donor sperm is an option.  Most, but not all, sperm donor banks screen their donors for the CF gene.  Persons with CF may choose to adopt a child, however, this avenue is not open to all with CF.   Some adoption agencies will not consider a potential parent with CF and most agencies require that at least one parent is in good health before placing a child.

What words of caution are there for the sexually active person with CF?
Finally, contraception is an important consideration for all sexually active persons with CF. Even though men are generally infertile this should be confirmed by laboratory testing.  Women should always consider themselves fertile and plan accordingly.  Remember to practice safe sex to protect against sexually transmitted diseases.
 
In summary, there is hope for adults with CF who desire to be parents.  The decision to be parents should only be made after careful thought and planning.  Your CF care team can provide further information about the risks.
 

 

This page last updated December 23, 2003 by Brandi Thorpe.