Hello to all,I was just wondering if anyone else is pregnant with a baby that has been diagnosed with CF. I am 25 weeks pregnant, due in July and am getting a little nervous about the delivery of my precious little girl. I would love to hear from anyone that would like to share experiences and emotions.Thanks,Blythe email me directly at~~ blythe.weston@comcast.net
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ANYONE ELSE PREGNANT WITH A BABY THAT HAS CF?
- Thread starter anonymous
- Start date
Hi Blythe,I have a child who is thankfully CF free...as I am the one with CF. I am 30 yrs old and became pregnant when I was 24. It was a very nervous time for me...because we did not have my husband tested to see if he was a carrier....so everyday I wondered if I would have a child with CF. And CF is not a newborn test in Missouri..which is where I gave birth to her....so I had to go another 6 months before I knew either way. So in a way, I can understand what you are going through...I want to say stay positive. There are so many new medicines and research going on for CF. Your baby girl is lucky to be born in todays times rather than years ago. I have met so many more CF people through this website along with another....and have met many great and strong people. Your daughter is going to be a strong little girl...I can tell you that. I have lived as much as a normal life as anyone. Yea, there were things I couldnt do as well as others....but so what. I am also stronger mentally than alot of people I know. Dont keep her in a "bubble". I believe that is the worst thing a parent can do...I know it is going to be hard. But I was allowed to do things other kids did...and I did fine. I'm still overall healthy... I do have complications related to the CF...but is nothing I cant handle! Good luck with your baby girl! Take Care! Congratulations...she is a precious gift! Dea
Hi, I just had a baby boy with CF. He was born 03/23/04. He is absolutely precious - if I didn't know about the CF I would never be able to tell. I was also very nervous, but trust me as soon as they lay your daughter on your belly it is love at first sight. I just keep starring at him and finding it hard to believe he's mine. I wish you the best. Debi
<img src="i/expressions/face-icon-small-confused.gif" border="0"> my daugher 28 years old in undergoing testing for infertility. she was just informed that she is a cf carrier, her husband will be tested tomorrow. no one in our entire family has ever been diagnosed as a cf carrier. what does this mean? if her husband is a carrier what do we do? get a sperm donor? this is all so new to me, please help. her sister has 2 childen and when she was pregnant, cf never came up.
Something like 1 in 25 or so people are carriers. I'm not sure on the exact #, but it's pretty close to that, depending on ethnicity. If your son in law is a carrier, then every child they have has a 25% chance of having cf, 50% chance of being a symptomless carrier (like your daughter), and a 25% chance of NOT having cf or carrying the gene. If that's the case, they should discuss it with a genetic counselor who is really current on cystic fibrosis. Also, keep in mind that even if your son in law tests negative, there is still a chance that he could be a carrier of a rare mutation and therefore, their children could still possibly have cf. Only the Ambry genetics test screens for all known mutations and it is not the most widely used test, especially not for genetics counseling/prenatal testing. Also, if your other daughter's children have ANY symptoms of cf (lung problems like RAD or asthma, recurring lung infections, serious sinus problems, failure to thrive or gi problems, recurring infections), they should be tested. If they don't have any symptoms, your other daughter may still want to be tested for the same gene your daughter has. If she also has it, she may want to have all of her children sweat tested just to be on the safe side. What gene does your daughter have? HTH.
Hi there it's Blythe,Thanks for everyones reponses! You guys are great!I am not sure excatly what the in-vitro question is?? It seems you are almost as far along as i am(21-26 weeks pregnant), how can they do tests on the embryo? I am sorry if i sound ignorant. I know that if we had known that my husband and i were carriers before we were pregnant we woud have done in-vitro to take the cf gene out but because i was 19 weeks pregnant when we found out gives us no option but to have the baby or abort it. If we plan to have more children we may consider in-vitro and that sure would be nice if insurance covers it!! I know there is a place in California that does genetic in-vitro gene selection not sure of the name but it costs about $18,000. I believe the question was answered about the 1-25% chance of having a cf baby when two parents are carriers. I just want to add that we also have a beautiful healthy little 2 year old girl that does not have cf and is not a carrier! We had no clue what cf was with her pregnancy! So we got the both 25% chances- If your daughter is not pregnant yet and your son in-law is a carrier too, you can have the above option for in-vitro to rule out the cf gene. Maybe her insurance will cover it? Best of wishes and let us know.
bowlingguy
New member
All i can say is its great to see you on this site, already involved in your childs health. Researching and learning is the best way to give your child a happy life. I'm 32 and when i was diagnosed my parents decided to not have ny more children, if this is your first dont let this stop you from having more children. And remember the treatments for cf have increased 100 fold in the last 5-10 years, and there is plenty of reason to believe your child can have a happy normal life. My parents were told that I was going to pass before I reached my teens. Then they rethought when i got to 12 and actually told me and my mother that I would prolly die before I hit 20, all in all I have never let anything anyone told me about my disease stop me from being active, and fighting as much as I can. And I owe all that to my parents who never stopped me from doing anything and always made me feel like a healthy kid. i wish you and your family the best ...god bless...
My husband and I just found out we are pregnant. We aren't due until early November, and I am only 9 weeks along. We have a 2 year old w/ CF and we have been contemplating since his birth if we would ever have another child, knowing what the risks are. We go to the doctor apr. 20 to undergo a CVS to find out if the baby has CF or not. We pray it will be healthy, but we know we will make it through o.k if it does have CF. We also looked into preimplantation genetic diagnosis (PGD). Unfortunately, our insurance doesn't cover it and it is VERY costly and you aren't guaranteed to get pregnant on the first try. We found it helpful to meet with a genetic counselor to look at all of our options prior to getting pregnant. Best of luck to you and your child.Jodi, mom of Tucker w/CF
There are only five things I can say...1. Mandatory Pregnancy Regulations2. Mandatory Genetic Screenings3. Mandatory abortions of a fetus comfirmed to have any genetic disability such as CF, Down Syndrome, etc.....4. Such policies are good for American and European Union Taxpayers, Health Insurance Companies and most importantly good for the World. 5. There is a cure for Cystic Fibrosis... Eliminate the genetic Line. In one hundred years, CF and many other genetic anomolies could be a thing of the past. God Bless America and the European UnionSBAEUScientists for a Better America and European Union
AbsintheSorrow
New member
Okay, anonymous Hitler-wannabe. I know many people view this site, so I will simply say...<b>F You!!</b>I have CF, and I'm damn proud to be me. And if you don't like it, you can kiss my ass. Maybe we should have genetic screening for ASSHOLES, and then we could be rid of people like you. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">I think there are far worse things to be or have than CF. You are a perfect example, and perhaps someone should slice you open and study your brain. So that in future fetuses, we can abort unborn children that have the famous asshole gene that we'll name after you. Thank you, and goodnight!*bows*
To SBAEU, in case you haven't noticed very few people die of "old age." People generally die from disease (cancer, heart disease, etc.). These diseases are often genetic. Eliminate the genetic line...does this make sense? Eliminate the whole human population? Have you been tested to see what diseases you carry? The average person carries about 4 or 5 genes for disease. About 1/20 people carry the cf gene in the US. Since you seem to be taking the role of God in deciding who should die and who should live, why don't you take some time and actually learn about God...it sounds like you truly need him in your life - you have not found happiness.
Eliminating the entire human species from this planet is probably the best idea. The individual who wrote that we all have faulty genes is correct.I say eliminate the entire population of the world. After all, its better for Earth and most importantly its better for the Universe.Thank you,He who fights to eradicate all human scum and their future spawn.
I have to agree with SBAEU. I think that is an excellent idea. You have a long fruitful career ahead of you in government or scientific ethics. I have a few additional supplements to your suggestions.1) Expand the mandatory abortions to people prone for migraines, poor eye sight, premature balding, lisps, flat feet, cow licks, IQs below 130, and general ugliness.2) Slaughter all persons under the poverty. These people have little value for society and give little back. 3) Execute all people over the age 80. Imagine the boon to the medical industry and the economy as a whole by relieving them from taking care of our grandparents.These are just some other great ideas from Medieval public policy. I am sure if you look at some of the other great benevolent leaders of the past century, like Hitler or Stalin, you can find similar sparkling brilliant ideas for how to make everyone the same.BradBlythe's husband
You are a scary human being! I am very saddened by your response and hope you never visit this site again!!!! I just gave birth to the most precious baby boy w/CF and I don't love him any less than my daughter w/o CF.I hope you never have children because I would never want another person like you out in this world!Please stay off this site - you have literally sickened me!