Should I have more children if my first baby has CF?

Jennifer - posted on 12/29/2009 ( 31 moms have responded )

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My son has CF and was diagnosed at 5 months old. Until he was diagnosed we had no idea that the CF gene was even in my family. I want to have more children but I'm not sure the best way to accomplish that. I know we could just 'hope for the best' and see what happens but we have a 1 in 4 chance of having another baby with CF and I'm not sure if that's fair to knowingly do to a child. Another option is IVF and that's insanely expensive. Is there anybody else out there who has faced this same dilemma? Anyone have more than one child with CF? I'd love to hear other people's thoughts...

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Kami - posted on 01/16/2010

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What an intensely personal decision. My first son was diagnosed at 7 months and it was devastating. He is doing better now (he will be 3 in March) but we too wanted more children. My husband and I had to do some serious soul searching to decide the best route for US. After a lot of soul searching and trying to decide "when life begins" (against abortion) we opted for IVF with PGD. Pretty intense process. It didn't work the first time (which was hard since I thought because I didn't have a fertility problem but a genetic one, it would be an easy process) but we were able to have two embryos (1uneffected 1 carrier) implanted and I am now 9 weeks pregnant with a single fetus. I can completely relate to the "what do I do" and as you can see, it is different for everyone and ultimately you are the one that has to live with the implications. I would love to answer any questions you have about IVF or anything else!

Stephanie - posted on 02/04/2010

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Hi Jennifer. I recently just went through the same thing. My son was diagnosed over a year ago now at 8 months old. He is our second child. Our first was then tested and does not have CF. We always wanted more children and the shock of finding out we were carriers for CF was really hard on us and at first we thought we would not take the risk. We considered IVF, but the cost is just way too high for us. After a year of my son being diagnosed and adjusting to the treatments, we decided we really did want another baby and decided that we wouldn't have changed who our son is with or without CF so we wouldn't want to change who our next baby would be either. What really made us make up our mind to take the 25% risk is that doing IVF would take out the CF gene, but what about the heart disease, cancers, diabetes, asthma, ADHD, etc that we have in our family's and so there is a risk of that too?? We can't guarentee that even if we do take out the CF risk, there wouldn't be something else. More importantly, we decided that nothing would change how much we would love our child and how hard we would work to make sure they are well taken care of. I am currently 17 weeks pregnant with #3 and waiting for the results of my Amnio so we can know before the baby is born whether or not he has CF too. I happy to be pregnant again and am already completely in love with the baby boy growing inside me so I know that no matter what the outcome of the amnio, we will be all right with it and will make it work ;) Good luck with your decision...and don't make it too lightly. We thought a good year on it before making our decision and before knowing we would be able to handle the outcome. I hope hearing my story has helped a little :)

Stephanie - posted on 02/25/2010

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I agree fully with Marcy. Just thought you might want to know we got the results back from the amnio and this baby will not have CF...so although we are both carriers, only 1 out of 3 children has it.

Kelly - posted on 03/13/2010

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hi i am a mum of 3, my middle child has cf but unfortunately was not diagnosed until the age of 2 by which time i was already pregnant with my third, luckily for me, my youngest tested negative for cf. i always wanted a large family and have like you weighed up my options and have come to the conclusion that if i ever have another baby it will not be by natural conception between me and my husband because i couldnt risk the 1 in 4 chance of having another cf baby. i look at it in the way that i know my daughter is quite healthy with her cf but there are days when she suffers badly with it and i know there are going to be days in her future when she is going to be very poorly with it and i could not make another one of my children suffer, if u knew u were going to have a baby with aids, hiv, cancer, lukemia or any illness like that would u have 1, probably not because of the amount that baby could suffer, in my eyes a cf baby is no different from any of the illnesses above because as yet they cant cure it all they can do is try and keep the baby healthy to prolong its life, u cant be sure that if u have another cf baby that it is going to be as healthy as the one u already have. make do with what u have got and make that babies life as special as you possibly can and cherish every moment because you never know just how long it will last, your child is the most special precious thing u are ever going to have so please seriously consider other options before u go in for normal conception of a baby

Kim - posted on 02/27/2010

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Hi Jennifer, It's a very hard choice isn't it? I'm a mom of a 22 year old c.f. son. I'm not sure the current age of your child but, I chose adoption. My husband and I have a c.f. son and adopted 5 more children. My son was diagnosed at 5 weeks old. He had been fortunate enough to have good medical care and is doing pretty well. Graduated with honors in three years with a four year degree in computer networking and securities. Loves a great young lady who he plans to marry in the near future. If I knew what he would go thru over the years, I would NOT have tried for several years to have another. And my son is considered only mild to moderate lung disease. To watch him suffer, at times is very difficult. Don't miss understand me, I love my son with all my heart and he is one of my greatest joys in life. Adoption can be wonderful too and there are so many in need! I hope this helps. Good Luck! Kim

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Michelle - posted on 03/07/2014

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im only 26 and i also have 2 children with cf girl aged 4 and a boy aged 2 i wanted a big family but so scared incase i have anover with cf , my little boy has it worse than my daughter he spent 13 weeks in a bby unit had 2 opps lots of problems me and my husband are talking about me gettin sterilized but i am scared, i realy want a nover child but dont fink i could cope if it has cf x

CANDY - posted on 11/03/2013

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My daughter had one child eight who is a carrier and one four year old who has cf. She is blessed with a mild case. She always wanted more children but decided against it till it came time to do something permanent to keep from getting pregnant. The only reason she could come up with not to have another baby was the chance it would have cf. She looked at the beautiful smart daughter she has with cf and how full of life she is. How could she deny the world another person like this. If her daughter asked why she never had more children would she want to say I didn't want to bring any more like you in the world. She has just had another baby girl and yes has just found out she has cf too. I can only say their family, our family , the world can only be a better place because these two little girls are in it. Thank you God for who they are. All of us are imperfect. They are a blessing.

Patty - posted on 09/29/2010

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You should follow your heart. You have the experience and knowledge under your belt. I too have pondered this question, my first born has CF and we didn't know we were carriers either. After thinking about it, we never regret having our son because of CF and he is such a blessing in our life, we couldn't imagine life without him. So we did have another child and they are carrier only. It is a tough decision to weigh. Good luck!

Lisa - posted on 08/11/2010

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hi, my 13 year old daughter has cystic fibrosis, i found out when i was pregnant. i was 16 when i had her and had no idea what cf was so i had alot to learn. anyway to put a long story short i disided i wanted a big family so i had 4 more children all are non-cf good luck in whatever you deside i would have more.

Desiree - posted on 07/26/2010

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im glad i read all the comments for this post b/c i have thought about the same thing. my daughter will be 15 months old in a few days & was diagnosed at a month old. im still a young mom yet & dont plan on having any more children in the near future but i always worried about any other children i have, having cf. i always wanted more children but i heard so many stories of families having multiple cf'ers that i started to shy away from the want for more children. after seeing more stories of families having more children with cf it's given me a little encouragement to maybe go ahead & try for another baby... someday. just not yet =]

i think i'll be ok to take my chances whether they have cf or not will not matter. the point that they could bond is nice if i had another child with cf & if it didnt have cf then that would be great too.

Lara does have a point about adoption. i feel bad for all the children out there stuck in the system & if i had the money for adoption i would definitely take that route someday but from what i've heard adoption is quite expensive. whenever i hear of adoption tho, i try to encourage adoption within the country because SO many ppl do international adoptions even tho there are so many children right here who need families...

i hope this has helped =]

Valerlie - posted on 06/07/2010

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Hi Jennifer It's of course a desion only oyou can make. we also didnt know we had the Gene either or even any thing about CF until my son was diafnosed at a month old. Hes my middle child Thank God my other 2 dont have it. But they do have other problems. there is a 1 in 4 chance. Cf come a long way in the last 20 years. tehy find out more all the time. there could be a cure in the near future. i took the chance and had another. I was willing to knowing that i f she had had CF. I would have done every thing i could to give her the best life possible. I have never regreated a moment that i had my son. It's hard now that hes older and i have no control over him. hes headed off to collaae next Septermber. looking forward to a full life

Lara - posted on 05/29/2010

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I am a new mom. My son was diagnosed at 2weeks. He is 5months old.

I think this is a question we all will face, and it will be up to us to decide what is morally right or wrong.

The desire to have another child of my own is growing strongly inside of me....but I won't, for the simple reason of fairness. I will not be selfish in my wants and make another child suffer for it.
It will be hard enough to raise one child with CF to do everything he needs to do each and everyday on his own without struggles and fights.

My husband and I GAVE this disease to our baby, he had no say in the matter, we are single-handedly responsible for his shorter life span, WE caused the possibility that every sick person he meets could be the end for him....its not ok that a CF'r has to face so many things EVERYDAY, they live a life of "differentness" I don't know about you but I had a hard enough time not falling into peer-pressure and I don't have a disease.

IVF: What if the first baby that is made in a dish had CF? Are you alright with killing your child in order to get a "good" one?

CF'rs around others like them share their sicknesses....so instead of 1 child in the hospital there will be 2.

There are thousands of children that all have been told a similar story by their birth parents..."We don't want you" If and when my household is ready for another member we are going to go grab one of those children and tell them how much WE love them.

Katie - posted on 05/15/2010

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My daughter is 8 with CF and I am pregnant with my second child. Definitely a surprise pregnancy. The one I'm pregnant with has a different father and although I haven't had the testing to find out if this one has it or not yet, the chances are extremely low. Right before I got pregnant my daughter had told me that she wanted me to have another baby that had CF. I was surprised so I asked why? She said because she wanted someone she knew to be like her. I told her, but you see how much you hate it, why would you want your bro/sis to go through that? She said, I just do. It broke my heart. Now that I am, she is really excited about the possibility. I can't bring myself to tell her how low those chances are. But I agree with everyone else, it's definitely a personal decision. I personally, would not have wanted to have another child with her father. It breaks my heart too much to see her go through what she goes through. Double would just be devestating. Good luck.

Missy - posted on 04/10/2010

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I have a 13 year old son that has CF. He was a fertility baby and like you we did not know that there was a CF Gene on both sides and at that time they did not test for CF carriers when you were trying to conceive. We do have another child that was an absolute miracle, no fertility drugs, and he does not have CF. I had the same feelings that you had. Wanted more children but unsure what to do. Six years later God made that decision for me and I had to believe that what was meant to be was meant to be. I was completely shocked and worried because we didnt think we could have children without fertility drugs. Our 7 year old does not have CF. You are right there is only a 1 in 4 chance and you wonder if it is fair to knowingly do that. Your child with CF was given to your family for a reason and they are doing so much with therapies and hopefully very soon there will be a cure. With my second, once I decided that no matter what happened this baby was coming and I was going to love him just like I did my first one CF positive or not and we would get through it and if he did have CF we would deal with it. I have to share with you another worry that you will have if you do become pregnant again. Waiting for that test on the second child stirs up a bunch of emotions as well. You feel guilty for hoping so much that this test will come back negative on the second child. When you get that news you will be elated but it hurts to because you want that first child to be free of CF as well. You always want the best for both your children and that is a hard thing to face. I wish you all the best in your decision.

Gail - posted on 04/07/2010

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My answer is yes, if you want more children. We have 3 sons and our middle son has CF. We debated the same question after our second son was born and diagnosed with CF. Our thoughts were that if we had another baby and the baby had CF then our son with CF would not be alone, and if the baby did not have CF...well that would be great. Our 3rd child did not have CF and we are very proactive in our middle son's fight for a cure! You have to do what your heart tells you. Life is too short to second guess. Best wishes to you!!



Gail Frazier

Angela - posted on 02/25/2010

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My first daughter has CF. I have two other daughters who both tested negative for CF. There is no family history of CF in either family. I have a friend who has 5 children. Her last three all have CF. They are also very different in their severity of the disease.

Marcy - posted on 02/25/2010

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My son was also diagnosed at 5 months. He is now almost 10. I also have a 12 year old, and a 19 month old, who neither have CF or are carriers of the gene. If you want another child, do not let CF stop you. It is a risky decision, but the joy that the child will bring into you, your husband, and your sons lives is worth much more than the 25% chance that the other would have CF. We spent 8 years on that decision, and would not have changed it even if the baby did have CF. Good Luck!

Jennifer - posted on 01/22/2010

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Hi Angela - we don't use the vest in Canada either and that's where I'm located. My son's physiotherapist told me it's unnecessary and extremely expensive. It basically does the same thing that the manual physiotherapy (clapping) does.

Angela - posted on 01/22/2010

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hi jenneifer i a mom of 4 and 2 of them have cf jack was diagnoed at 8 week and his older brother 2weeeks later at 2y10m they are now 13 and 10 and doing ok i have had training to do IV's at home which mean they don't have to stay in hospital their younger brother and sister 8&7 are realy good and understand all about their med's and physio which they use a accapeller can you let me now about the vest as i'm in the uk and have never heard of it, i think in your heart you should have more children if thats what you realy want as having 2 children myself with cf is not that bad as the do bond with each other and help each other when one is bad etc

Dee - posted on 01/14/2010

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Hi Jennifer
We have a 15 month old with CF who was diagnosed at 8 days who was our first child (my husband has 2 from a previous marriage woCF) so this was the first we knew of it. After we learnt more about the condition we discussed having another child. in the uk we could go down the IVF route, but before this could happen i found out i was pregnant. we spoke to a genetic councillor and my sons cf team who were amazing, we were told at 13 weeks after having a cvs test that this baby will not have cf although we dont know if he will be a carrier. I felt so guilty while waiting for the results that i was careless but we would continue with the pregnancy regardless of the outcome as i wouldnt change my son i waited so long for him i know he was chosen for me for a reason. It is such a personal issue and you can only go on the information we other parents give you but ultimately only you can decide. What ever your decision everyone on here im sure will stand by you.

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I think that it is totally up to you and you...it doesn't matter what others think. If you think you can handle the possibility of 2 children with CF, then that's great for you!!!

I am one of 5 children and I am the only one in my family with CF. My Mom and Dad didn't know they were carries until I was diagnosed at 6 months old. Even knowing that I have CF, and that they are carriers, my Mom had another child (different Dad) and my Dad had another child (different Mom). I know for a fact that 3 of my siblings are carriers of the gene, and all of them have children without CF.

I am also a mother (my son turned 4 today) and I was told to abort the pregnancy because of the possibility of him having CF (and also because I needed to be evaluated for a double lung and liver transplant). I knew that my husband could be tested for the gene so I had him tested instead of aborting the baby. Even if my husband was a carrier (which he's not) I would not have aborted the pregnancy. I knew that it was my only chance to be a Mom. I am very thankful for the decisions that I have made and am very happy that I am a Mommy, knowing the chances of my son having CF.

Jennifer - posted on 01/05/2010

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Quoting Tammy:



My first child was diagnosed with CF at 2 weeks old i didn't want to have any more children becasue of the chance of CF and was told i couldn't have any more.  But 5 years later i had another baby and was told i had a 50% chance that my second baby would have CF. My second baby did have CF he does much better because of the VEST it is a life saver and time saver. Bryce is my 2 years old he got the VEST when he was one. He has only been in the hospital once. My 7 year old was in the hospital for the first two years of his life.  But as soon as he got the VEST we seen a big improvment. I would check with your dotor it will help your child and you it makes a big difference in there life i believe.





The chances of having a baby with CF when both you and your husband are carriers is 1 in 4. That's a 25% chance with each pregnancy. I'm not sure why you were told 50% but that's incorrect. In regards to the VEST, that particular method of therapy is only used in the US. In Canada and the UK we use manual physiotherapy for airway clearance until approximately age 5 or 6 and then other breathing machines are used for physiotherapy as the child gets older.

Tammy - posted on 01/05/2010

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Quoting Jennifer:

Should I have more children if my first baby has CF?

My son has CF and was diagnosed at 5 months old. Until he was diagnosed we had no idea that the CF gene was even in my family. I want to have more children but I'm not sure the best way to accomplish that. I know we could just 'hope for the best' and see what happens but we have a 1 in 4 chance of having another baby with CF and I'm not sure if that's fair to knowingly do to a child. Another option is IVF and that's insanely expensive. Is there anybody else out there who has faced this same dilemma? Anyone have more than one child with CF? I'd love to hear other people's thoughts...



My first child was diagnosed with CF at 2 weeks old i didn't want to have any more children becasue of the chance of CF and was told i couldn't have any more.  But 5 years later i had another baby and was told i had a 50% chance that my second baby would have CF. My second baby did have CF he does much better because of the VEST it is a life saver and time saver. Bryce is my 2 years old he got the VEST when he was one. He has only been in the hospital once. My 7 year old was in the hospital for the first two years of his life.  But as soon as he got the VEST we seen a big improvment. I would check with your dotor it will help your child and you it makes a big difference in there life i believe.

Jennifer - posted on 01/04/2010

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Thanks for all the feedback so far. Keep it coming, please! For me, I'm pretty sure I want to have another baby. The question for me is more HOW I'm going to accomplish that. Either by taking my chances and risking the 1 in 4 chance that the next one will also have CF or by doing IVF so I know for sure the next one won't have CF. It's a tough decision - not just financially - but the moral implications too.

Erin - posted on 01/04/2010

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I have twin girls without CF and had no idea that the gene was even on my side of the family until our youngest was born, I'm adopted so there's a few wholes in my family background. Anyways, my husband wants another baby he wants to try for a boy, but I'm not sure if I can handle 2 CFers, but I think its something that when we're ready for another one we will have one and if not then we won't.
Kirby what you said about your two having something to bond over is so true, I know that my youngest will be left out since she isn't one of the twins, and having another baby with CF would give her someone to bond with in the family I never thought about it that way.

Kirby - posted on 01/03/2010

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I really enjoyed reading Erica's response as I am a mother of one kid without CF, one with CF, and due to give birth to another child with CF in March. I don't necessarily believe in God, but I believe in something out there and feel that I am given what I can handle. I feel that, although we didn't plan to have anymore kids b/c of our CF mutations, this little girl was given to me for a reason. I try to think of the positive side of it all and hope that her big brother can teach her all about his boom-boom machine and all the important stuff about taking care of himself. He's only 2 right now and the baby of the family, so it's neat to think of him and his baby sister bonding over this. He won't feel alone and she won't feel alone. They will have each other to comfort and vent to and they'll truly be able to understand what each other is going through. It takes a lot of soul searching to figure out what is right for you and your family. I am still coming to terms with feeling guilty about passing this on again and what other people might think, but at the end of the day, this is our family. There are a lot of advances in CF research that make me optimistic for both of my kids' futures and make me get more active in fundraising to help not only my family but those other 70,000 families. Of course no one can tell you how to plan your family but hopefully you can reach a decision you are comfortable with. I know it's hard to think of knowingly passing this onto another child b/c I've been there, but I'm also learning from my CF center and other parents that it isn't the horror story I originally thought. We have completely reshaped the way our family works in order to accomodate our 2-year-old and are willing to further reshape for whatever our daughter needs to keep her healthy as well and to be able to act quickly when there is a medical problem. Good luck to you and your family and your decision.

CHRISTAL - posted on 01/03/2010

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You have to remember there is only a 1 in 4 chance of having another cfer. It seems the only people who have answered you are the ones who have multiples.

We didn't find out our 9 yo had cf until he was 26 months old, 4 months AFTER his sister was born. She was also tested and is only a carrier (which, yes, means when we have THE TALK with her it will have to be more intense). I can't imagine not having her in our lives. I can honestly say that I would have had another had I already known my sons diagnosis.

We can't put our hopes and dreams on the back burner. We have to show our CFers that life goes on and is productive so they have hope. We have to show them that we don't "suffer" from CF....We "LIVE" with CF! A cure is close, keep that in mind, there is hope.

Good luck with your decision.

Erica - posted on 12/31/2009

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Jennifer- My oldest is 6 with CF and when he was 3 months old we found he had because he had a bowel obstruction and had to have surgery. Did the sweat test and found out. We weren't sure if we were going to have more kids or not, but we decided ultimately to leave that in Gods hands. When our daughter, who is going to be 3 in Jan, was born, we knew she had CF just by knowing some of the signs. Large appetite, she had a salty taste when sweating, etc. So, with 2 children with CF we believe that God will not put upon us more than we can handle. We know what to expect with the CF and just take one day at a time. It's easier, I have to say, to have them both with CF because I think they "get it" together, they are sooo close despite age difference. They understand each other in a way I never thought. With whatever decision you make, it will be the right one.

Denise - posted on 12/30/2009

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I have 2 children w CF--we did not know about being carriers until the second baby was born. I long to have more children but would never take that risk. I have seen my children come so close to dying and frankly their daily struggles are so hard. It was very hard to believe that my extremely healthy 2 yr old had CF but now that he is 6 1/2 it is so easy to see it. We have ups and downs. We thought about having more by using donated sperm. That is soooo much more affordable than IVF. But to be honest, having 2 kiddos w CF is a lot of work. Maybe one day I'll have that large family...

Sandra - posted on 12/30/2009

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Jennifer depending on which country you are in there is always help! In Australia our medical system will provide help with IVF for medical reasons. I have a friend who is a CF nurse who had 8 siblings and 4 of them had CF. Sadly only the non CF ones remain on this Earth but still they all had good lives it is what you and your family make of it ! Time for a visit to a Generic Counsellor who will talk you through all the pros and cons. Being informed is better than going in blind folded.

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