Chances of baby having cystic fibrosis?

Question

Does anyone have cystic fibrois? I just found out that I am a carrier of it. And I am pregnant. My husband is getting tested next week to see if he is a carrier of it too. If my baby was to have it what steps in life will i have to take to make sure the child has a comfortbable life. I have read that the average person with cyctic fibrois only lives to be in their 30's. Is that true or just statistics? Any info on this would be greatly appriecated.

Answer 1

My wife and I are both carriers.

First off, your husband's chances of being a carrier are roughly 1 in 25 if he is of european descent. I mean if he's 'white' if that's not clear enough, I don't want to be confusing.

IF and only IF he is a carrier, then there is a 1-4 chance of your baby having cystic fibrosis.

So right now, there's something like a 1% chance of your baby being affected. That will jump to 25% of your husband is a carrier.

My cousin died of cystic fibrosis about 5 years ago. She was 21. Life expectancy used to be in the mid-teens for CF affected children, it is increasing. It is _possible_ that by the time our children are in their 30's, the lifespan will have been pushed back much further - but its not for certain.

If your baby has CF, you should begin managing the disease _immediately_. Personally I would suggest prenatal testing if your husband is a carrier. While some parents opt to terminate pregnancies if the child is a carrier, even if you won't, I think its best to know before birth, so you can be a little more 'ready'. One impact of CF is that affected children have trouble getting nutrition. (The more obvious impact is a continual build up of fluid in the lungs). My cousin was very petite - likely because of the nutritional issues. Before she died, she received a partial lung transplant from her father and brother, which unfortunately never really took. They now give children with CF some kind of medication to help them with their nutrition. I still belive if she'd been physically larger and stronger - which she might have been with current medicine - she might have been able to take the transplant better.

Good luck to you. When my wife and I were pregnant with our first, we had exactly the same experience - I was a carrier, she tested while pregnant and found she was also a carrier, which might for quite a stressful pregnancy. Thankfully, our daughter is only a carrier - like us. I hope it turns out well for your family.

Final piece of advice, from my aunt, is that she urged everyone in our family to do 'whatever we had to' to not have a child with CF. We can only imagine what its like, she's lived through it.

http://www.cysticfibrosis.com/
www.cysticfibrosis.ca

Answer 2

The CF carrier screen is a blood test taken by parents to see if they carry the abnormal genes that cause CF, in order to determine the risk of having a child with CF. If the test results show that both parents are CF carriers, your health care provider can test the baby. If the baby has CF, parents can take time before delivery to learn more about the disease and find appropriate specialists.

Whether you have the test is your own personal choice, but if you have a family history of CF it is probably an important test to have.


Sometimes if you have something that they need to test for you can have an amniocentesis. That can tell you what the baby can have.

What is amniocentesis?
Now that you have become pregnant, your primary concern is probably your baby’s health. Many of your child’s characteristics are determined at conception. You and the father each donate 23 chromosomes which form the genetic blueprint for your child. So, just as hair and eye color run in families, so can more harmful conditions. The fetal cells, chemicals, and microorganisms surrounding the fetus provide a wide range of information regarding your child’s genetic makeup. Amniocentesis involves extracting and examining these things in order to determine if your baby has a chromosome disorder or for fetal lung maturity.

Why would I have an amniocentesis?
Amniocentesis can be recommended to you in many different circumstances. These include:

- If you are over 35 years of age. This is done mainly to determine if the fetus has Down syndrome, which is more prevalent among children with older mothers.
- If you have had another child or a close relative that has had a neural tube defect in the past, your doctor may recommend an amniocentesis to rule out the possibility of a defect in your child.
- If both you and the father are carriers for an autosomal recessive inherited disorder such as Tay-Sachs or sickle-cell anemia, an amniocentesis may be recommended to see if your child is suffering from the disorder.
- If you have already had a child that was born with a chromosomal abnormality such as Down syndrome, an amniocentesis will be able to determine if your fetus exhibits the same abnormality.
- If you are a carrier for an X-linked (or sex-linked) genetic disorder, an amniocentesis can identify whether the baby has inherited the gene from you and determine the gender in order to see if they will be affected by the presence of the genetic defect.
- If you or the father has an autosomal dominant disorder such as Huntington’s chorea, an amniocentesis will be able to identify if your child will be affected by the disease.
- If any type of infection of the fetus or the mother is suspected an amniocentesis may be recommended.
- If it is necessary to evaluate the maturity of the lungs of the fetus late in the pregnancy, an amniocentesis may be recommended.

The Procedure
Amniocentesis is best performed at 15 to 17 weeks of gestation, but occasionally as early as the 14th or as late as the 20th week. Amniocentesis can also be performed in the last trimester to assess the maturity of the fetal lungs. Test results are usually back in one week.

The expectant mother is positioned on her back with her abdomen exposed. Using, ultrasound, the location of the fetus and placenta are located. This is in order to reduce the chance of accidentally pricking the fetus. The abdomen is then swabbed with antiseptic solution and sometimes a local anesthetic. A long, hollow needle is then inserted through the abdomen and into the uterus. A small amount of amniotic fluid is then withdrawn. Before, during and after the procedure, the mother’s vital signs and the fetus’ heart tones are monitored to ensure no complications are experienced. You may also have the option of learning the baby’s gender with the test results, or you may choose to find out the old-fashioned way. From start to finish, the entire procedure should not take more than 30 minutes.

If a genetic disorder is detected, you will be referred to a genetic counselor for further counseling and decision making. The genetic counselor can answer all your questions, and suggest further tests to help see how your child’s health may be affected. In many cases, a genetic counselor can reassure you that the risk to your baby is lower than you feared.

Risks and benefits of amniocentesis
Amniocentesis gives us the ability to extract and examine the fluid from the amniotic cavity. It is more than 99 percent accurate in diagnosis or ruling out Down syndrome, among other things. It rarely results in any symptoms in the mother. It is probably best that you take the remainder of the day off and rest. You may experience a few minutes to a few hours of mild pain or cramping after the procedure. You may also experience some light vaginal bleeding or amniotic fluid leakage. In rare occasions you may experience infection as a result of the procedure or even more severe complications that may lead to miscarriage. It is suggested that it may raise the risk of fetal loss by 0.5%. Thus, amniocenteisis shold only be used when the benefits outweigh the risks.

I hope this all helps. And good luck!

Answer 3

Even if you are a carrier, if your husband isn't then there's no way for the baby to have CF. If your husband is a carrier, then there's still only a 25% chance your baby will have it (you'd both have to give the gene for it for the baby to have it).

I don't know a whole lot about the condition itself, sorry. Best of luck!

Answer 4

From the little I know of CF they must have made advances over the years - years ago people were not living past 15 or so - I believe (dont quote me here) that both parents have to be carriers of CF - there must be a CF association you can contact in your area I would give them a call and get as much information as you can from them... Good Luck!

Answer 5

if you both test positive, the next step is an amnio to see if the baby has gotten the gene, if so, unfortunately you may want to consider your options very carefully. It is a terrible disease, causes lot's of pain and suffering for the child, and yes they do not live long, the quality of life is effected and the strains on the family and child are enormous... Good luck to you, I will keep you in my thoughts and hope that all turns out fine for you and the child

Answer 6

There is a small chance of that if there is a family history of illness in your family.So look into your family history.