| As they embrace adult life, more and more CF patients are starting families, but the path to parenthood can be tough. Though few male CF patients can father children without expensive surgery, many young men were never told they were infertile. Female patients, in contrast, can conceive relatively easily, despite the predictions of some doctors that the disease would leave them sterile.
Despite medical advances, cystic fibrosis remains a fatal disease, and doctors often have to remind patients that they may not survive to raise their children. Pregnancy and sleepless nights strain patients' health, and exposure to schoolyard sniffles can trigger life-threatening infections in a parent's CF-ravaged lungs. For those who decide to have children, parenting can be both deeply fulfilling and bittersweet. from Newsweek (page 64, September 12, 2005 issue). Click www.msnbc.msn.com/id/9193315/site/newsweek/ to view the article in entirety. (This article fails to mention the significant impact that choices made during and about pregnancy, birth, breastfeeding, sleep arrangements after the baby's birth and other parenting choices can have on the parent's health. Some choices regularly produce superior outcomes for the health of parents with CF. Many, but not all, of these choices are presented here--ed.) Out of a group of 145 US adults with CF, 20 women and 9 men had children, 12 women and 0 men conceived naturally, 3 women and 2 men conceived via artificial insemination, 7 women and 8 men adopted children. From CF Roundtable. Gresham, OR: United States Adult Cystic Fibrosis Association; Winter 1994:6-10 (This data does not give context for these numbers to tell us how many women were unable to conceive or carry a pregnancy to term versus how many chose to opt for adoption instead of trying to conceive, nor how many of these 145 were trying to build families. These numbers also do not add up correctly.--ed.) About 95% of men and 20% of women with CF are infertile. Click www.pediatrics.wisc.edu/patientcare/cf/ to view the article in entirety. Female Fertility in CF Most women with CF are fertile, though they often have more trouble getting pregnant than women without CF. In both boys and girls, puberty is often delayed, most likely due to the effects of poor nutrition or chronic lung infection. Click www.healthatoz.com/healthatoz/Atoz/ency/cystic_fibrosis.jsp to view the article in entirety. CFTR (defective CFTR in people with CF blocks the transport of chloride and causes the thickening and stickiness of the mucus) is found in large quantities on the cervix. The expression of CFTR is believed to be hormonally mediated and, while in health the water content of cervical mucus varies during the menstrual cycle, peaking at ovulation when 93-95% hydration allows the passage of sperm through the cervical canal, these cyclical changes in hydration are not seen in patients with CF and the mucus retains increased tenacity throughout the cycle. Endocervical polyps and mucus plugs have been reported to arise [de novo] or when triggered by hormonal contraception, and the cervical os and canal may become blocked with mucus plugs which are thought to be a cause of infertility in patients with CF. The endometrium and fallopian tubes contain some CFTR but are reportedly normal. The ovaries do not express CFTR but, although they develop normally in children, abnormalities are seen in adolescents and adults with redundant follicular cysts and reduced numbers of follicles noted in post mortem and ultrasound studies. In a study of 45 female patients with CF aged 15-40 years, 20 of the 40 who had commenced menstruation were regular, 11 had irregular or missed periods, and nine had secondary amenorrhoea. Those whose periods were regular, irregular, or had amenorrhoea could be discriminated between by percentage body fat. Spirometric tests showed considerable overlap between the groups, but all amenorrhoeic patients had forced vital capacity (FVC) less than 55% predicted. There appears to be little evidence that fertility is reduced in healthy women with CF, except by the mechanical barrier of the cervical mucus plug. Click thorax.bmjjournals.com/cgi/content/full/56/8/649 to view the article in entirety. Thirteen of 29 women (45%) reported that it took > 2 years to conceive. Four of these women had no difficulties conceiving in a subsequent pregnancy, while three women were unable to conceive a second time. Four women received hormonal treatment and insemination with the husband�s sperm. Click www.chestjournal.org/cgi/content/full/118/1/85 to view the article in entirety. Women with CF have a normal reproductive tract, but abnormalities with the cervical mucus and difficulties with the menstrual cycle may reduce fertility. (Fiel SB. Pulmonary function during pregnancy in cystic fibrosis: implications for counseling. Curr Opin Pulm Med. 1996;2:462-465) No other drug in the Physician's Desk Reference has as long a description of side effects as the birth control "PILL". Breast cancer, cardiovascular disease, blood clots, liver tumors, high blood pressure, infertility, steriliy and abortion are some of the more serious problems associated with the "PILL". In fact, the new third generation "PILL" seems to be more dangerous than the previous ones. from "The Birth Control "Pill" -- Unavoidably Dangerous" Vol.I No.2, Homefirst News (www.homefirst.com) (For suggestions on determining your fertility see Female Fertility or if you plan to use or hope to avoid IUI or IVF, see Improving Fertility for suggestions on how to maximize your fertility and the potential success of these treatments--ed.) Male Fertility in CF Ninety-eight percent of men with CF are sterile, due to complete obstruction or absence of the vas deferens, the tube carrying sperm out of the testes. While boys and men with CF form normal sperm and have normal levels of sex hormones, sperm are unable to leave the testes, and fertilization is not possible. In both boys and girls, puberty is often delayed, most likely due to the effects of poor nutrition or chronic lung infection. Click www.healthatoz.com/healthatoz/Atoz/ency/cystic_fibrosis.jsp to view the article in entirety. Up to 98% of men with cystic fibrosis (CF) are infertile due to a failure to develop, or early blockage of, the mesonephric ducts and vas deferens. Click thorax.bmjjournals.com/cgi/content/full/56/8/649 to view the article in entirety. More than 95% of men with CF have congenital bilateral absence of the vas deferens (CBAVD). From Growing Older With CF: A Handbook for Adults (c.1997 Solvay Pharmaceuticals, Inc.) Sperm production (of men with CF and CBAVD) is completely normal but the sperm simply can't get out. The same gene that is required to allow (men with CF) to have normal lung and pancreas secretions is the gene that directs the formation in the developing fetus of the vas deferens. Click www.infertile.com/treatmnt/treats/pamphlet.htm to view the article in entirety. (Because sperm production is normal it is still possible to father a child. If you plan to use MESA and/or ICSI see Improving Fertility for suggestions on how to maximize the potential success of these treatments--ed.) Genetic Screening for CF Genes (If you are currently pursuing or interested in conceiving a biological child, you will likely be referred to a genetic counselor at your CF clinic for carrier testing of the partner that does not have CF or to gene-type your mutations if you have not already had this done. This enables the doctors to narrow their search in identifying whether your child has inherited CF or is just a carrier. Unfortunately, this counselling session is often used as an opportunity to discourage adults with CF from pursuing biological parenthood. Continue to read through this site, read the full articles I have referenced, and expand your search with any other complicating factors or individual concerns you may have so that when you go to this session, you will be well informed and able to discuss your options confidently--ed.) Currently available DNA tests cannot identify all CF gene mutations. At present, diagnostic DNA tests screen for between 6 and 72 CF mutations. Available genetic tests are optimized for detecting the gene mutations � such as deltaF508 � that are most common among Caucasians. In other population groups, therefore, these tests are much less sensitive. These tests can identify 90% of the cases occurring in Caucasians but only 75%, 57%, and 30% among persons of African, Hispanic, and Asian decent, respectively. From National Institutes of Health Consensus Development Conference Statement. Genetic Testing for Cystic Fibrosis. National Institutes of Health; April 14-17, 1997; Bethesda, MD. Since 1991, genetic counseling with testing for the most common CF mutations has been offered to all presumptive fathers [at our center]. One expectant father was found to be a carrier for the R117H mutation. The couple decided to continue the pregnancy and declined further prenatal investigation of the fetus. The child did not inherit the mutation. One infant had CF diagnosed, despite having no mutations found on a previous genetic screening of the father that had been performed elsewhere. Click www.chestjournal.org/cgi/content/full/118/1/85 to view the article in entirety. (As of 1999) over 800 mutations in the CFTR gene have been identified, although not all are disease causing. The most common mutation in the UK is the three base pair deletion, deltaF508, which accounts for 75% of carriers; three commercial multiple-mutation assays are available that can detect about 86% of carriers in Scotland, Wales and the North of England, or 80% elsewhere. Different proportions apply to Asians (35%), Ashkenazi Jews (95%) and Blacks (41%). The UK birth prevalence is 1 in 2400, which implies a carrier frequency of 1 in 24. A carrier couple have a one in four risk that each of their children has CF; this is reduced to under one in 50,000 if neither parent has a detectable mutation. When only one parent is a carrier the risk is about 1 in 500. Usually probands are told that close relatives can be screened but only one-third of first- and one-tenth of second-degree relatives are tested. There have been three studies of the more active cascade screening approach. Uptake was higher and a large proportion of those tested were carriers. However, mathematical models have shown that under 15% of carriers in the population would be detectable this way. Click www.ncchta.org/execsumm/summ308.htm to view the article in entirety. Carrier screening of the general population is possible using DNA mutation analysis. CF carrier testing is not recommended at this time (2003) unless a family history of CF is present. It is difficult to detect all carriers. Only 80 - 90 percent of carriers will be identified with the available tests. Newborn screening is recommended to prevent malnutrition as well as improve lung condition. Click gslc.genetics.utah.edu/units/newborn/infosheets/cf.cfm to view the article in entirety. Cystic fibrosis is an autosomal recessive disease with a carrier rate of 1 in 22 to 25 in Caucasian Americans of Northern European background; the most common mutation in this group is called F508 (accounting for 75 percent of disease).The CF gene is also common among individuals of Ashkenazi Jewish heritage, who have a carrier rate of 1 in 25. The most common mutations in this latter population are 5T and W1 2828 (accounting for 48 percent of cases). The identity of the most common mutations in other racial or ethnic groups is not completely known (2001). Click patients.uptodate.com/topic.asp?file=antenatl/9892 to view the article in entirety. [There are] more than 1,000 mutations of the CF gene [as of 2004]. Click www.cff.org/about_cf/what_is_cf/ to view the article in entirety. Adoption (If you cannot conceive a child biologically or choose not to do so, there is the option of giving a child in need, a family. Though not conceived of your body, your biological gift to this child need not be excluded. It is possible and not so uncommon to successfully breastfeed an adopted infant or toddler. Please see Specific Concerns of Breastfeeding for information and resources about this viable option--ed.) Reading and Resources CF Fertility/Infertility website www3.nbnet.nb.ca/normap/cfinfertility.htm Men With Cystic Fibrosis Are Having Biological Children www.cysticfibrosismaleinfertility.com (This website has diagrams and information specifically for men with CF about fertility treatments and resources as well as the authors' journal of their journey through fertility treatments to parenthood--ed.) A Change of Heart by Above Rubies Productions Be Fruitful and Multiply by Nancy Campbell (available from http://aboverubies.org) The Making of a Patriarch by Collin Campbell (available from http://aboverubies.org) Does the Birth Control Pill Cause Abortions? by Randy Alcorn Abortion in the Church by Max Latham |
| Excerpts from various sources detailing the issues of fertility of women and men with CF |
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| Behold, children are a heritage from the Lord, the fruit of the womb is His reward. Psalm 127:3 And whoever welcomes a little child like this in My Name, welcomes Me. Matthew 18:5 |