My first child has cf. We found through prenatal screening. She's 16months and is doing wonderful. No problems, except I would love to have a 2nd child, but scared to have another child with cf. I wouldn't give up having emma for the world, it's just how do you handle two children with cf. I know theres a 25% chance, but that's a lot. My husband (who's a great dad) won't even consider having another baby. it's not up for discussion with him. Has anyone thought of invitro kind of stuff? What kind of options are out there?Mommy to emma 16mos. w/cf
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Debating to have a 2nd child??
- Thread starter anonymous
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I have to say that I agree with your husband. I am 29 with CF, I am getting married this August and I too do not want to have kids. Even though my future wife has been tested and is not a carrier. I am in fairly good health and have never been hospitalized because of CF. The fact that I will probably die young and could leave my child without a father at a young age does not sit well with me at all. One more thing, when I first started coming to this site I read a post from a woman who had 5 kids. 4 of the 5 have CF and three of them have passed. Dave 29 w/cf
Hello,You could opt for Pre-Implantation Genetic Diagnosis (PGD). I know it is expensive and alot of insurance companies don't cover it but it is an option if you and your husband are not comfortable with the 1 in 4 odds. I think if my husband and I were to have another baby we would look more closely at this option as well as adoption. I have a baby on the way with CF and a 3.5 yr old without CF so I can't comment on having two (since I haven't had this baby yet). Good luck with whatever you choose.
I read a lot about "playing the genetic lottery" you have a %75 chance that your child will be healthy. That does not sit well with me. The PGD option mentioned above is probably very expensive, but think of it this way. Let's just assume that the cost is $30,000 US (I am sure that is an overestimate). Many people are unable to afford something like that. But what if there was a cure for your CF child and all you had to do was pay $30,000? I don't think there is anyone on this site that would not find a way to come up with the money. Don't "take a chance" with your childs health. You have every right to have another child. I just hope you consider PGD or adoption.Your daughter is still very young. Perhaps it is too soon for your husband to think about baby number 2. Is his mind set against having another child through adoption or PGD? Perhaps your husband feels guilty considering another child - like it would be some sort of betrayal against Emma. I say this from experience. I was pregnant when I found out that my son has CF. I knew all I really wanted was for the baby to be healthy. However, there was a part of me that hoped for a girl... not because I already had a boy, but I felt some weird sense of guilt/betrayal regarding my cf son.... like if I had a healthy (non cf) boy, my cf son would feel inadequate. I never want him to feel "damaged" or "not good enough". In the end, our daughter was born cf-free. I do not think that we will have more children, but if we do, the child will not be conceived the "old-fashioned way". Ask your husband to open his mind and that you would like to reopen the topic for discussion next year. That way he knows that you are not giving up, but he doesn't feel pressured to give you an answer right away. You may need to talk to a counselor. This is a pretty important issue (to both of you) and you seem to be standing on completely different sides of the fence.I wish you all the best.
We were in the same boat after our daughter was diagnosed...I wanted another baby and he didn't. We talked about it a lot but I always knew he would never change his mind. Some of the things we talked about were: how lucky we were that we had one child when some people can't have any, up until now she has not had any respiratory issues and the digestive issues are under control for the moment, if we had another there may be some resentment that she needs extra care (especially if she was ever hospitalized), another child could have a more severe case than our first, and the time spent doing their treatments would take away from time we had to care for our 1st child.On the other hand I always wanted her to have a sibling and, cf or not, it would be a good support system for her. In the end we decided not to have another for a few reasons, the main one being that my husband didn't want to take the chance, and it takes two people to parent. The other main factor in my decision making was when a friend of mine called to say that her daughter was born, and has CF. It brought me back to the moment my own daughter was diagnosed and I knew I couldn't do it again, and that it wasn't the best decision for our family.It was the best decision for my friends family and she is happy with her 2 kids (both CF). You need to decide what is best for your family and your marriage, because you are the ones that live it every day and nobody can make that decision for you (both of you).Good luck with your decision, I know it is a hard one.
My son is only 15 months and he is my first so I really felt like I wasn't going to be able to have any more children without taking the risk or having to make some tough decisions along the way.I think the most important thing is to do what is right for you and your partner and most importantly your first child.I have had a friend who lost her marriage because they couldn't agree about having another child potentially with CF.I hope that you can both reach an agreement together which you will both be happy with.Best of LuckRebekah Mother to Matt 15mths w/cf
Hi, My daugter now 61/2 was diagnosed with CF when my son was a month old. My son does not have CF. My husband and I yearned for a 3rd child. We discussed it for many months and together we decided to have another baby and we would love it whether or not it had CF. At 16 months I have an amnio because I needed to know if the baby had it. Last August our little girl was born CF free. We consider ourselves very fortunate to have had 2 children w/o CF. It is definetly a personal choice. Most people were very supportive about our decision. If my husband and I were not carriers, we may have had more children, but I am not willing to tempt fate again. Adoption is another option which is wonderful for some families. I would personally love to adopt, my husband however feels differently.Good luck with your decision.
When our daughter (w/ CF) was around 12 months old our discussions began as to whether or not we should have another. We went through all the emotions I have just read about in the previous posts. My husband really didn't want to have another because of our first having CF. We discussed everything and before we had any children we knew we wanted them to have siblings. We agreed finally that whatever the outcome her sibling would be a great support for her. Both my husband and I have siblings and could not imagine life without them and wanted our children to have the opportunity to have sibling relationships like we have.Our second daughter was born when the older one was 26 months. She ws also born with CF. I did feel some sense of guilt initially (especially because she had meconium ileus and required 3 abdominal surgeries within her first 4 months of life) however it was soon overcome by a sense of joy for this new little person in our families life. We love our girls sooooo much! They are strong, beautiful and amazing people. As well, they are an excellent support system for each other.My girls are now 3 1/2 and 1 1/2. It isn't easy having 2 children with CF but it isn't impossible. Just as you felt when your first was diagnosed with CF (how will I handle all the meds, therapy, etc.) you experience those feelings again but to a lesser degree because you HAVE done it and you WILL be able to do it with the second as well.Good luck with your decision. It isn't an easy one to make and I agree, it is different for every family. I feel as if both my girls are a blessing and never regret the decision to have either of them!
Hi David,We decided to have another child because our little girl who has CF is a happy well adjusted child. Cystic Fibrosis is not her entire life it is a part of her life which does require much time for treatments and dr appointments. She has a great quality of life. She is able to do all things other children her age can do. This website is for people to support each other. I understand that you have CF and have your own opinions but why write something like that on this board? I was writing to speak to the person who is "depating to have a 2nd child?". You seem very bitter. Sometimes it is better not to reply on these boards if you are going to hurt people's feeling. Again, the boards are for support.
There have been a lot worse things on this than board, than me asking you "why you would temp fate again". And just so you know, I am not bitter that I have CF and in fact if you were to talk to anybody who knows me they would tell you the same thing. And if you spend some time reading the posts on this site you will learn that many people have expressed there personal opinions on this site. And you are right that it is just my opinion that you should not have tested fate again. When I first started coming to this site I read a post from a woman who had 5 kids. 4 of the 5 had CF and 3 had passed away, did she test fate too many times?I hope you realize how lucky you were.Dave 29 w/cf
Hi David, I do consider myself very lucky. Someone once wrote on this website, CF isn't the movie of your life, it's the commercials in between the scenes." I really like this outlook. I look at it that I have a little girl who has a disease with CF. She is not a CF little girl. I'm not saying that it isn't hard to live with CF, I have just experienced many other types of things people can be born with that I feel are far worse , for example people who are born that can't walk, talk, and have mulitiple disabilities. I would never regret having my daughter, although at the time I was unaware that she would have CF. I respect your opinion, I just hope that you understand why we decided that it was worth taking a chance to have another child. This is a very personal choice. No hard feelings.
I don't have any hard feelings toward you. I wish I could understand why you took the chance to have another child, but the reason why I don't understand is that I am not in your shoes and you are not in mine. If I did not have CF, but had a child with CF I don't know if I would risk passing it on to another child.Dave 29 w/cf
Thank you for your post. I'm the one debating. I was starting to feel guilty about even considering to have another child. This is my first time posting a message here and was looking for someone who has gone through this decsion. I always try to be positive, you're right our children could have something worse. This is not a decision I'm going to rush into. Emma is still young (16months). Thanks to all post, they have given me things to consider. I understand my husbands point of view better.
Dave, Really none of my business, but, in another posting you said that you have a twin with cf, and that you have been a great support to each other. We chose not to "tempt fate" as you put it because it was not the best decision for our family, but this is a personal decision. I think your last posting answered your own question. As parents we want to offer siblings to our children. In some cases this may be more true if they have CF because they need that support and as parents we will never fully understand what they are going through. Although we decided not to have any more children I always worry about what will happen to her in years to come if we are no longer around to take care of her. If we had chosen to have another child then they could take care of each other, or the 2nd child (if healthy) could take care of their sibling.I also am constantly wondering how to offer her a support system as she grows because she will need to speak to someone else that understands exactly what SHE goes through and not what we as parents think she goes through.I hope this answers your question as to why people might "tempt fate". You are also lucky to have a twin to offer the support which you give each other.
Hello everyone. I have twin boys six years old with cf. I understand what dave is saying. Sometimes I feel so guilty knowing that I brought this disease upon them. I hate to watch them suffer through hospital visits and IV antibiotics and treatments and meds but, on the other hand I can't imagine my life without them. I don't know what I would do in the situation of deciding to have another child I think it would be a really hard decision. We have an older son cf free and when the boys were dx it was really hard to believe. I do think within my heart if he had cf I would probably still have another child simply for the same reasons that everyone here as expressed. I know when the boys were dx I thought they were going to die the next day. I had a good friend who also has a cf child tell me this "you don't know that the boys are going to die from cf, you all could be killed in a car wreck tomorrow or, one could be dx with cancer or even worse." So after that I took each day at a time and love them for that day. I am lucky my boys have a good quality of life. I have said before you would never know they have cf by looking in. They do everything the same as other kids(maybe more). In all we really take a chance having a child anyway. We are not promised a perfect healthy child but that does'nt stop us. That child might not be born with cf but maybe downs or celiac or any other disease. Its just that we know that we are carriers and that makes us think twice about that choice. I hope you do what's in your heart. Sometimes I feel like i was given cf twins to teach me about life and the things that are important in life. Sure my boys might have a shorter life than noraml but we are living that time to the fullest. Good luck in your decisions.