Ok I have a question and I need serious opinions from people who can speak candidly about the topic.My Husband was diagnosed as a carrier of CF. I went to my doctor to get tested for CF and he told me that he wouldn't test me because I shouldn’t have children with my husband because of this. He said that I was playing "Genetic Roulette" with my children's lives. He assured me that my children wouldn't have it but that it was very likely that my Grandchildren would have it. He told me that they would live a horribly crippled sad existence until they were 18 - 20 and then they would die. And he told me that it would be my fault if I let that happen.;-( Well as you can imagine that was heart breaking!Now, there are a few things I know for sure.1. I'm getting a new Doctor either way, he was a huge jerk.2. If I am not a carrier there is only a very small chance that my child could be born with CF, and even then it may not even be related.3. There is a 50 - 50 chance my child could be born without the carrier gene of CF4. If my child is born with the carrier gene, they would have to meet another carrier and have children for it to matter greatly.5. and if they do meet another carrier and have children there is only (in a perfect world) a 25% chance of them having a child with CF.Now, as mothers of children with CF and people with CF what would you do?Would you risk having children? Am I being selfish?Please be as honest as possible....I would rather be crushed now then be crushed later.Thank you very much!
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I need some serious opinions.
- Thread starter anonymous
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Ok I have a question and I need serious opinions from people who can speak candidly about the topic.My Husband was diagnosed as a carrier of CF. I went to my doctor to get tested for CF and he told me that he wouldn't test me because I shouldn’t have children with my husband because of this. He said that I was playing "Genetic Roulette" with my children's lives. He assured me that my children wouldn't have it but that it was very likely that my Grandchildren would have it. He told me that they would live a horribly crippled sad existence until they were 18 - 20 and then they would die. And he told me that it would be my fault if I let that happen.;-( Well as you can imagine that was heart breaking!Now, there are a few things I know for sure.1. I'm getting a new Doctor either way, he was a huge jerk.2. If I am not a carrier there is only a very small chance that my child could be born with CF, and even then it may not even be related.3. There is a 50 - 50 chance my child could be born without the carrier gene of CF4. If my child is born with the carrier gene, they would have to meet another carrier and have children for it to matter greatly.5. and if they do meet another carrier and have children there is only (in a perfect world) a 25% chance of them having a child with CF.Now, as mothers of children with CF and people with CF what would you do?Would you risk having children? Am I being selfish?Please be as honest as possible....I would rather be crushed now then be crushed later.Thank you very much!
The thing to remember here is that you do what is right in your heart. If you are a carrier you are correct there is a 25% chance, but if you are not there is no way that you will pass this on to your children. That doctor of yours needs to re-screw his head on right after those comments. The hard thing to remember is that yes this is a terrible disease and knowingly I would not have had children but that is my opinion everyone has their own. In my case as with so many of the others we did not know that our son was going to have this disease. To be honest I did not really even know anything about it. Now though you ask me if I regret having my son. The answer to that to all of the nieve people out there that ask me this. I tell them not for a minuet. When I was pregnant I Knew that my baby was sick with what I did not know. In fact the doctors told me that my son would not live to be more than a day or two old. Now he is 7 months old. Yes living with the terrible disease but living and loving every minuet of it as of right now. You will make the right decision. Also you should be able to get that test ran some how if you are really wanting to get it done I can ask our clinic how you would go about doing this. I hope that you all have a great day. God blesses us in many ways. Sometimes in ways that we just dont even want to deal with but my baby Colgan is truely that A BLESSING!!!!!!!!!
The thing to remember here is that you do what is right in your heart. If you are a carrier you are correct there is a 25% chance, but if you are not there is no way that you will pass this on to your children. That doctor of yours needs to re-screw his head on right after those comments. The hard thing to remember is that yes this is a terrible disease and knowingly I would not have had children but that is my opinion everyone has their own. In my case as with so many of the others we did not know that our son was going to have this disease. To be honest I did not really even know anything about it. Now though you ask me if I regret having my son. The answer to that to all of the nieve people out there that ask me this. I tell them not for a minuet. When I was pregnant I Knew that my baby was sick with what I did not know. In fact the doctors told me that my son would not live to be more than a day or two old. Now he is 7 months old. Yes living with the terrible disease but living and loving every minuet of it as of right now. You will make the right decision. Also you should be able to get that test ran some how if you are really wanting to get it done I can ask our clinic how you would go about doing this. I hope that you all have a great day. God blesses us in many ways. Sometimes in ways that we just dont even want to deal with but my baby Colgan is truely that A BLESSING!!!!!!!!!
As a 42 year old adult with CF - I would love to have the name and phone number of that doctor. He is horribly misinformed and probably should not be giving advise. Yes - CF can be a horrible disease with some people, however there are also some people that have CF that live full - wonderful lives. I was diagnosed when I was 6 months old - they actually told my parents to put me up for adoption so they would not have to deal with a child that was going to die! The first thing my Mom and Dad did was change doctors! As I said - I am 42 and I work full time, and have a wonderful live. I would not trade it for anything - EVEN with my CF. Don't let a doctor scare you off, even if your husband is a carrier, your chances of having a baby with CF is still just that a chance. I am the 11th child in my family and the only one with CF. Yes - that is rare, but I think my family proves that it is possible to have children that are healthy without CF even if you are a carrier.Please feel free to e-mail me anytime or post here if you need any other questions answered. My e-mail is rosienpete@yahoo.com. <img src="i/expressions/face-icon-small-smile.gif" border="0">
WOW,I cant believe that man is a doctor! First of all...he doesnt sound like he knows enough about CF...because he didnt get the facts correct! If you are NOT a carrier...there is NO way for any of your children to have CF! BOTH parents MUST be carriers. Your children could only be carriers. If you are also a carrier, there is a 25% chance for each child to have CF, a 50% chance to be a carrier, and a 25% chance of being neither of the 2. I would go to a CF clinic if I were you...explain to them about your husband being a carrier...and I'm sure they will test you...then go from there. CF is no longer a "childhood disease" . More and more adults are living long lives every day! I am a 30 yr old female with CF. I also have a 5 yr old daughter who does not have CF. Of course, shes a carrier because I have it...but that s in the future. I have high hopes that by that time a cure will be found and she will not have to worry about this disease for her children. Research has come a long way since I was born. I wasnt expected to live anywhere close to the age of 18...but I'm going strong...and doing well! Of course, I have complications, but they have made me the strong person that I am. I am determined that this disease will not get me.......So as far as you having children...thats going to be something that you and your husband will have to decide. My opinion.....I wouldnt change having my daughter for anything....I took a risk, but she is the best thing that has ever happened to me! CF is a bad disease.....but you have to take each day as it comes....as with everything! No one knows when they are going to die! Your children are likely to live long lives.....even if CF should be part of it. Sorry for rambling...Good luck to you and your husband!Dea
You should report that doctor after you tell him that he is not only wrong but dangerously misinformed. He should not be counciling you when he doesn't have his facts straight! He can't deny you testing to find out if you are a carrier. He should encourage it! I am completely outraged by his comments. What a complete idiot he is!!!!!!!!! If you and your husband are both carriers then you have a 25% cance of having a child with CF. If you are not a carrier then you only have a 50% chance of your child being a carrier, and now that we have this valuable testing, your child and your child's partner would be able to have it done to find out if they were a carrier! the median age for people with CF is NOT 18 or 20! It is mid 30's. There are a lot of people who, when diagnosed, were not expected to live to their teens but are now in their 30's 40 even 50's and 60's. a few are even hitting their 70's (though that is pretty rare)My husband and I do plan to have one more child some time (but not now) If you are both carriers there are some IVF procedures that can be used to have a child without CF. It is called IVF with PGD. once the fertilized egg starts to devide they can take a cell and test for the known mutations of the parents. I would get all the info I could on CF & IVF and march into his office and suggest that he read it before he councils another woman in such an insensitive and cavalier fashion! And then I would tell him that I was reporting him to the medical board, what ever hospital he is associated with and whoever else I could get to listen to you including the media if necesarry! Feel free to print out my basic Genetics page on our site and hand it to him! http://groups.msn.com/TeamRachelJaneMy daughter is like a bright little star. She is active and smart as a whip. I couldn't imagine my life without her.Andrea
What kind of doctor is this? I would drop him fast! He obviously does not keep on his medical research. He does not know what he is talking about. I would get the test done and do what you and your husband feel lead to do. Praying is always a plus. God has a plan for everyone, even those with CF or whatever else they may have. Just because someone doesn't have the Cf gene it doesn't mean they will have a perfectly healthy baby either. We all love our children no matter what they have or don't have. As a mother of 3 (2 w/o 1 w/cf) I love them all the same and would have them all over again, even knowing what I know now. Yes the CF makes life challenging at time (every day ) but everyone has challenges. God never said that life would be easy, but that he would see us through and never give us more than we can handle( even though we feel like we are at our limits) and we will never have to do it alone as long as we humble ourselfs and ask for help. I'm curiouse, where is this doctor, I want to make sure I never see him. Michelle
Thank you all very much, you have helped me so much.This "Doctor" is one that I have been going through for 3 years and I've just had it with him. We live in North Dakota, and unfortunatly, the doctors here are VERY set in their ways! But, I have decided that I am going to go ahead and get tested anyway and then see what happens. God Bless all of you!
well, dear, i've met plenty of doctors in my life, but the one you're talking about is a complete idiot.i'm 20, with cf. i won't repeat the statistics, because everybody else had posted them. but honestly, that doctor lives in the sixties/seventies when it comes to cf. we don't live "horrible, crippling" lives. my "horrible, crippling" life includes many friends, lovers, writing for magazines local and international, fullfilling my dreams, achieving my goals, making love - and cf is just a part of the daily routine. not really what the doctor has in mind, huh? as for dying at age of 20 - so some do die in childhood. but these days, there is so much that can be done, some of us are grandparents already! the chairman of the cf union here in israel has cf and he's 59 or 60 years old.
Have kids!!! If you are not a carrier then it is not an issue, I have a 2 year old with CF, I didnt know I was a carrier until I was already pregnant, it was just unfortunate that my partner was as well!! Jackson, my boy is an absolute darling and I wouldnt trade him for 10 kids without CF.Although it can make life interesting, there are many worse things than CF that can go wrong. Get a new doctor and find out if you are a carrier to before making any assumptions!! Good luck and HAVE KIDS!!!Steph, mum of Jackson, 2 with CF
As a 35 year old, stay at home Mom with CF, I am disgusted with what this doctor has presented to you. He should lose his license. First of all the info is incorrect. Secondly even if your children would get the actual disease, it is not his place to present this info/opinion in the fashion he did. He is responsible for giving you accurate info & what has been proven, but he can not predict the future; therefore by no means should tell anyone what/how he did. Even with all the data available, all CF patients are different & things/treatments/responses will vary. I am glad to hear that you are looking for another doctor, but I am concerned about the next person he does this to. This does not fall under the oath he took when he was presented with his degree in medicine. Enjoy your life, have your children & be grateful that you know your husband is a carrier so that your children can be tested along with their mates when they are old enough to have children. Its a part of their medical history & at this point, nothing more. <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/face-icon-small-disgusted.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-mad.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-tongue.gif" border="0"><img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
I did not know I was a carrier of the CF gene until my second child was diagnosed at 7months. I wouldn't have made any different choices if I had known. He's strong and full of character. CF is a part of who he is not a defining feature. Do what is right for you and your husband, but be sure to base your decision on accurate information. Seek out genetic testing and go forth. You decide. Me? I pick being mom to the most awesome kids ever. One kid just happens to have CF.
I just read your letter and the responses. I just want to tell you that neither my husband nor myself knew we were carriers. We didn't find out until our oldest daughter was "officially" diagnosed when she was nine. She has two younger sisters who do not have it but are carriers. As I tell my Katie, it's a life style not a life sentence. It is only a part of her. This doctor is not only ill informed but he sounds like he lacks any kind of bedside manner or compassion. How dare he be in this type of business. I have wondered if I would have changed anything if I knew...gotta be honest, if I never had what I have, I'd never know what could have been. My girls are all wonderful and spectacular, CF or not...One of our girls is OCD (Obsessive-Compulsive Disorder) which actually started up when her sister was diagnosed. Would I change that? No, because it's part of her, but I would like it to be easier on her. Follow your heart and your instincts. And do get another doctor, IMMEDIATELY!!! I would love to know how you are doing. Feel free to contact me @ wfeeley1@earthlink.net.My name is Gwen. Take care and God bless.
Oh my gosh!!! I can't beleive a Dr would miss lead someone so badly...Well actually I can beleive it. He must be from the dark ages. And your right on the #1 getting a new Dr. Find someone who will test you. If your not a carrier you can NOT have a child with CF. You could have a child who is a carrier, just like your husband. But as you already know, a carrier has no symptoms or CF related problems, they are simply a carrier. And as you also know being a carrier means that when your ready to have children(, (like you and your husband) you need to make sure your spouse/partner is not a carrier also. If you do test positive for being a CF carrier then you'll have to decide if you want to risk having a child w/ CF. We didn't know (my husband and myself) that we were carriers of the CF gene untill we had our daughter and she was diagnosed w/ CF. When we had her (she was our second child) we had already decided we wouldn't have any more children. So I don't know what we would have decided if we had known our risks before hand. Everyone with CF is diffrent. No two cases are alike. People present diffrnet symptoms and respond diffrently. You never know if your child my have a very "mild" case or "sever" case. Our daughter is fairly mild (so we think). But if we were to have another child w/ CF they may be totaly diffrent. You'll just have to decide what your able to deal with. I will tell you it is very hard not knowing the future of your child. But there's not a mom out there that knows for sure how old their child will be before they die with or without CF. It is just hard knowing the cards are stacked up and could tumble at any time. I will also tell you that I can not imagine not having our daughter. She has brought joy into our lives. Taught us so much about life and what's important. Also just to add her (our daughter) life is not a horribly crippled sad existence, she is happy, has tons of friends, is loved and liked by just about everyone she meets. If you met her you wouldn't know she had CF.
I totally agree that your doctor was a jerk. By knowing that your husband is a carrier, you can warn future generations of their risks, and it was completely ignorant for him to say those things to you. I'd expect more from a doctor. I am that third generation your doctor is speaking of, which means I myself am probably a carrier. If I carry a CF mutation it just means that once I decide to have kids I should get my (future;I'm only seventeen,) husband tested. By being aware of my risk I can take preventative action, just like your future grandchildren can do.Thanks for reading!-Emily