My husband and I have two sons, 12 yr old w\o CF and 11 yr old w\CF. My husband wants another baby and so do I, but I'm scared. We have always wanted more children, we originally wanted four then we stopped with our two sons and now my husband wants more. I don't want to feel guilty or be accused of being selfish for bringing another child into the world that would have CF. We have talked with our CF doctor and she is wonderful and supportive. We know it is only a 25% chance for the child to actually have CF, we know all the scientific details. Now I am asking those of you with more than one child with CF, how did you decide, do you have any regrets and do you have any advice? I am a firm believer that what ever happens...happens for a reason. I have an appointment to have my IUD removed Oct. 2 and told my husband if I get pregnant by March it was meant to be, if not then it must not have been meant to have another child.
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My Husband Wants Another Child
- Thread starter LUCYJANE
- Start date
Be prepared, this can be a very hot topic on this board.
The biggest thing I would worry about is cross contamination. What does your son w/cf culture? The infant would exposed to that bug so I would definately be concerned about the infants health. So I think your biggest hurdle will be how to protect them from each others bugs without hurting family unity.
Good Luck
z
The biggest thing I would worry about is cross contamination. What does your son w/cf culture? The infant would exposed to that bug so I would definately be concerned about the infants health. So I think your biggest hurdle will be how to protect them from each others bugs without hurting family unity.
Good Luck
z
This has been discussed a lot here, and it IS a hot topic. I'll stay out of that debate but here's a link to one of the threads:
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=11355&highlight_key=y&keyword1=having%20another%20baby
">http://forums.cysticfibrosis.c...ving%20another%20baby
</a>
I have two kids with CF. We do our best to keep them away from each other when they're sick and when they're coughing (PT or nebs). They are allowed to be in the same room at clinic and in the hospital. They do share a mycobacteria but I've been tolds it was environmental not passed between them. So far they have always cultured different things.
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=11355&highlight_key=y&keyword1=having%20another%20baby
">http://forums.cysticfibrosis.c...ving%20another%20baby
</a>
I have two kids with CF. We do our best to keep them away from each other when they're sick and when they're coughing (PT or nebs). They are allowed to be in the same room at clinic and in the hospital. They do share a mycobacteria but I've been tolds it was environmental not passed between them. So far they have always cultured different things.
I do have a word of advice....you can only make the decision. You will get all sorts of advice on boards. In the end, it is your decision and what you works for your family and what you can handle.
I have two kids and they both have cf. My first was diagnosed with cf at one month old. We went into the second pregnancy knowing the risks and knowing we would be blessed with whatever God decided to bring us - a baby without cf or a baby with. He did truly bless us and I have never had any regrets. I knew we could handle two with cf and we do. I have made up my mind though, that three with cf would be a bit too much for me. Emotionally for me now as well as the time it takes to keep them healthy. Later it would be watching 3 with cf get sick.
Up until now they have cultured different bacteria. They now both cultured one bacteria - staph. Personally, I think it is wonderful that you guys are thinking of trying again. Children are blessing regardless of any imperfections.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
I have two kids and they both have cf. My first was diagnosed with cf at one month old. We went into the second pregnancy knowing the risks and knowing we would be blessed with whatever God decided to bring us - a baby without cf or a baby with. He did truly bless us and I have never had any regrets. I knew we could handle two with cf and we do. I have made up my mind though, that three with cf would be a bit too much for me. Emotionally for me now as well as the time it takes to keep them healthy. Later it would be watching 3 with cf get sick.
Up until now they have cultured different bacteria. They now both cultured one bacteria - staph. Personally, I think it is wonderful that you guys are thinking of trying again. Children are blessing regardless of any imperfections.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon,
Thank you for your reply. I agree ALL children are blessings. I thank God every day for my two healthy sons. Because overall my 11 yr old with CF is very healthy. We have been truely blessed. My faith is strong and I should be ashamed of myself for worrying or thinking the "what ifs". I know that God's will be done. I appreciate you taking the time to help me see that yes, GOD is the one in control and I should never question His plans. If I get pregnant that in it self is a blessing because so many can't have children. <><
Thank you for your reply. I agree ALL children are blessings. I thank God every day for my two healthy sons. Because overall my 11 yr old with CF is very healthy. We have been truely blessed. My faith is strong and I should be ashamed of myself for worrying or thinking the "what ifs". I know that God's will be done. I appreciate you taking the time to help me see that yes, GOD is the one in control and I should never question His plans. If I get pregnant that in it self is a blessing because so many can't have children. <><
I am good friends with a couple who just gave birth to their 2nd child. Their first child was diagnosed with cf at birth. They were like you, believing that what happens happens. So they did not want to do any scientic intervention to avoid having another cf child. They also went through the whole pregnany not wanting to know the sex or if the child had cf. Testing carries a small chance of miscarriage and they did not want to risk that. Plus the information would not have changed their mind about continuing on with the pregnancey. Well, their child was born last month and as we all know there is a 25 percent chance the baby could have cf. Well, it turns out that the baby is not even a carrier of cf, which is also a 25 percent chance. They were prepared for this child in their hearts either way. If you two can be prepared in your hearts for a child either way than you probably have your answer. I will keep you in my prayers as you discern this very personal decision. Best wishes to you and your family !<img src="i/expressions/heart.gif" border="0">
CFHockeyMom
New member
As has been mentioned, this is a very HOT topic.
Up until last year, I would have been open to the idea of taking the risk and having another child but my husband never was. Over the last year, I've rethought it and I definitely wouldn't do it. This really is your (and your husbands) choice but I encourage you to think out every possible scenario.
Yes, the odds are 1 in 4 that your next baby will have CF but to make an informed decision you need to assume the baby will have CF. Assuming the baby will not should not play into your decision because having a baby with CF is really what you are questioning.
Please consider the following (if anyone can think of anything else, please add)...
1 - The new baby may have a more severe case of CF. Are you prepared to explain to your older CFer why this 2nd CFer is not thriving and could potentially die before your 1st CFer?
2 - Are you prepared financially? If your financial/insurance situation is ok/good now, there of course are no guarantees for the future, can you handle an increase in the cost of care for two CFers?
3 - Do you have the time to put into another CFer? As you know, CF is time consuming from a parents standpoint when the children are young. Can you still give the appropriate amount of attention to your current children while caring for another CFer (again, you must consider the possiblity that the new CFer may need more care than your current CFer)?
4 - Have you discussed this with your existing children? What are their thoughts about another possible CF baby? 11 year olds can be quite insightful and honest. I'd definitely ask your CFer how he feels.
5 - Cross contamination is definitely a consideration. Discuss with your family what your intentions are for cleanliness, disinfection, separation, etc.
6 - Can your family handle the emotional side of having another CFer? Open and frank discussion with everyone involved may help you come to a decision.
7- Are you prepared to explain to CFer #2 why you decided to gamble with his/her life? When he/she is older, he/she may not be thrilled with you for knowingly "giving" him/her CF.
Have you considered IVF w/ PGD? If you really feel like you want another child you really should look into this.
Please don't disregard the feelings of your children. Yes, the decision is yours to make but at 12 and 11, they may have some very strong feelings about this. If you choose not to solicit their opinion or choose to disregard it, they may hold it against you.
Best of luck.
Up until last year, I would have been open to the idea of taking the risk and having another child but my husband never was. Over the last year, I've rethought it and I definitely wouldn't do it. This really is your (and your husbands) choice but I encourage you to think out every possible scenario.
Yes, the odds are 1 in 4 that your next baby will have CF but to make an informed decision you need to assume the baby will have CF. Assuming the baby will not should not play into your decision because having a baby with CF is really what you are questioning.
Please consider the following (if anyone can think of anything else, please add)...
1 - The new baby may have a more severe case of CF. Are you prepared to explain to your older CFer why this 2nd CFer is not thriving and could potentially die before your 1st CFer?
2 - Are you prepared financially? If your financial/insurance situation is ok/good now, there of course are no guarantees for the future, can you handle an increase in the cost of care for two CFers?
3 - Do you have the time to put into another CFer? As you know, CF is time consuming from a parents standpoint when the children are young. Can you still give the appropriate amount of attention to your current children while caring for another CFer (again, you must consider the possiblity that the new CFer may need more care than your current CFer)?
4 - Have you discussed this with your existing children? What are their thoughts about another possible CF baby? 11 year olds can be quite insightful and honest. I'd definitely ask your CFer how he feels.
5 - Cross contamination is definitely a consideration. Discuss with your family what your intentions are for cleanliness, disinfection, separation, etc.
6 - Can your family handle the emotional side of having another CFer? Open and frank discussion with everyone involved may help you come to a decision.
7- Are you prepared to explain to CFer #2 why you decided to gamble with his/her life? When he/she is older, he/she may not be thrilled with you for knowingly "giving" him/her CF.
Have you considered IVF w/ PGD? If you really feel like you want another child you really should look into this.
Please don't disregard the feelings of your children. Yes, the decision is yours to make but at 12 and 11, they may have some very strong feelings about this. If you choose not to solicit their opinion or choose to disregard it, they may hold it against you.
Best of luck.
If your extended family helps with the care of your kids (particularly your kid with cf) or gives you lots of emotional support in dealing with the trials of CF, don't ignore their thoughts either. Unpaid loving caregivers are hard to find. Don't want to burn them out or act in any way that suggests their contributions are taken for granted or less intrusive in their lives than they are. They might feel differently about taking care of another "semiplanned" CFer than they do about caring for your present kid.
<b>CFHockeyMom,</b>
With all do respect, my post was directed towards those parents that do have two or more children with CF.
But I will let you know that we are not selfish, ignorant or jumping into this decision lightly. We (as a family) have thought about all 7 of the concerns you have and <b>a lot more</b>. I would especially like to address #4 and #7. Yes my 11 year old that has CF has been included and is wanting another sibling. He is a very insightful and very honest 11 yr old. I would like to respond to #7 by saying that I have dealt with the guilt for 11 years of being responsible for; or as you put it "giving" by 11 yr old son CF. How about you, do you live with the guilt of knowing that your defective gene is to blame for your 10 yr old's CF.
I didn't start this topic to bring out the worst in people. I simple wanted to know how <b>THOSE THAT DO HAVE MORE THAN ONE CHILD WITH CF FELT</b>.
<b>Anonymous,</b>
My family and my husband's family both have repeatedly asked us when we are going to have another child. They feel that God is in controll and there are always risks with every pregnancy. For example if you have heart disease, cancer, diabetes or other diseases in your family do not have children because there is that risk as well?
<b>Alyssa,</b>
Though I think this is a very personal question, I am going to respond because you do have two children with CF. I would have my tubes tied.
With all do respect, my post was directed towards those parents that do have two or more children with CF.
But I will let you know that we are not selfish, ignorant or jumping into this decision lightly. We (as a family) have thought about all 7 of the concerns you have and <b>a lot more</b>. I would especially like to address #4 and #7. Yes my 11 year old that has CF has been included and is wanting another sibling. He is a very insightful and very honest 11 yr old. I would like to respond to #7 by saying that I have dealt with the guilt for 11 years of being responsible for; or as you put it "giving" by 11 yr old son CF. How about you, do you live with the guilt of knowing that your defective gene is to blame for your 10 yr old's CF.
I didn't start this topic to bring out the worst in people. I simple wanted to know how <b>THOSE THAT DO HAVE MORE THAN ONE CHILD WITH CF FELT</b>.
<b>Anonymous,</b>
My family and my husband's family both have repeatedly asked us when we are going to have another child. They feel that God is in controll and there are always risks with every pregnancy. For example if you have heart disease, cancer, diabetes or other diseases in your family do not have children because there is that risk as well?
<b>Alyssa,</b>
Though I think this is a very personal question, I am going to respond because you do have two children with CF. I would have my tubes tied.
Emily65Roses
New member
Claudette wasn't bringing out the worst in anyone. She was mentioning some very real subjects that many people don't think of. If you have, then good for you. She had no way of knowing you had already thought of them. She was taking the time to mention them to make sure you knew, which was responsible and helpful of her.
In regards to having more than one CF child, and "giving" them CF. She has one son with CF, most people don't know about CF until it appears in their children. I imagine she has guilt for "giving" her son CF (my parents do, I believe), but it's not the same when you DON'T KNOW you carry the gene. If you DO KNOW and you have a child anyway, then it's a whole different kind of "guilt" and "giving" and that, I believe, is what Claudette was referring to. Claudette, if I have misspoken, please tell me so. <img src="i/expressions/face-icon-small-smile.gif" border="0">
In regards to having more than one CF child, and "giving" them CF. She has one son with CF, most people don't know about CF until it appears in their children. I imagine she has guilt for "giving" her son CF (my parents do, I believe), but it's not the same when you DON'T KNOW you carry the gene. If you DO KNOW and you have a child anyway, then it's a whole different kind of "guilt" and "giving" and that, I believe, is what Claudette was referring to. Claudette, if I have misspoken, please tell me so. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I can't speak to the having more than one, but I can speak to politics around it. There is a CF walk here every year, and Ry's mom helps with a lot of it, and contacts a bunch of CF moms to help with stuff. Most of these moms have one kid with CF, and stopped after that, if not all. There is a family that has 6 kids here, 4 with CF. She is not included in this stuff, or the meetings of these moms, because they all see her as irresponsible. So know that some people are going to view you that way. And this isn';t non cfers, this is other CF moms involved in that. So, just FYI.
And Claudette was really respectful and polite.
And Claudette was really respectful and polite.
HelpCureCF
New member
Have you looked into PGD? We are thinking about it....We have a 4 year old w/o CF...a 22 month old w/CF...I got my tubes tied during my c-section with my 22 month old....was afraid to take the chance...(we found out during my last pregnancy that we were carriers)
Soooooooo...if we want to try for #3....we would have to do IVF with PGD.....very expensive option...but if it works.....and you get pregnant, the baby wont have CF....something to think about...
I personally couldn't take that chance......for all the reasons already mentioned. The way I see it is that I didn't know my husband and I were carriers...has I known.....I wouldn't have taken that chance and would've gone right to PGD....Just my opinion though
Soooooooo...if we want to try for #3....we would have to do IVF with PGD.....very expensive option...but if it works.....and you get pregnant, the baby wont have CF....something to think about...
I personally couldn't take that chance......for all the reasons already mentioned. The way I see it is that I didn't know my husband and I were carriers...has I known.....I wouldn't have taken that chance and would've gone right to PGD....Just my opinion though
CFHockeyMom
New member
I said nothing of being ignorant, selfish, or jumping into the decision lightly. I specifically said it was a personal decision and I merely raised a few potential issues for you and your family to consider.
You asked about regrets, decision processing, and advice. I believe I addressed all of those. Yes, it's true I'm not the parent of more than one CFer, so sue me.
I'm pleased that you've thought about these issues and others. Kudos. I don't believe I cited my list of thought provokers as an all encompassing list.
And <b>YES</b>, I do live with the guilt of giving my son CF as do most CF parents and one of the reasons many, including myself, choose not to have any more children. If I had any idea that the CF gene existed in my family and/or my husband's, we would have been gene tested before we made the decision to have our first child.
You may not have started this topic to bring out the worst in people but I think that's exactly what <b><u>YOU</u></b> have done.
Keep in mind, whenever you post on a public forum, you invite all types of responses and opinions. If you can't handle the diversity and are only looking for people to tell you what you want to hear, maybe you shouldn't bother posting.
BTW... based on your response, it's safe to say, you have yet to address #6!
You asked about regrets, decision processing, and advice. I believe I addressed all of those. Yes, it's true I'm not the parent of more than one CFer, so sue me.
I'm pleased that you've thought about these issues and others. Kudos. I don't believe I cited my list of thought provokers as an all encompassing list.
And <b>YES</b>, I do live with the guilt of giving my son CF as do most CF parents and one of the reasons many, including myself, choose not to have any more children. If I had any idea that the CF gene existed in my family and/or my husband's, we would have been gene tested before we made the decision to have our first child.
You may not have started this topic to bring out the worst in people but I think that's exactly what <b><u>YOU</u></b> have done.
Keep in mind, whenever you post on a public forum, you invite all types of responses and opinions. If you can't handle the diversity and are only looking for people to tell you what you want to hear, maybe you shouldn't bother posting.
BTW... based on your response, it's safe to say, you have yet to address #6!
I only have one child with CF but I wanted to add my two cents as we are also thinking about our options. We always wanted alot of kids and were shocked and devastated when our firstborn was diagnosed at 8 days old. Our wish for many kids hit a roadblock. It is such a personal decision and I would never hold judgement on any person who decided to take the 25% chance again. Often I feel they must have more strength than me b/c I don't think I could handle this again.
I work with kids with severe disabilities and it really puts things in perspective for me. CF sucks but so do alot of other things. Life is for living so that is what we will do with the hand we were dealt. It could be worse, it could be better....
I do not feel guilty for giving our son CF, I feel sadness that he will have some obstacles but I am so thankful for the things I have given him- his beautiful smile, his huge blue eyes, his amazing spirit that lights up a room. He is our number one priority and for that reason, I do not think we will take the chance of another CFer who may compromise his health. Plus I work full time and it would be too much to ask my mother to care for two little CFers. We have tried IVF and PGD but it was unsuccessful. Perhaps we will try again or look at other options. I honestly do not think there is a right/wrong answer, it is so personal and subjective. Just be at peace with whatever you decide.
Megan, mom to Aidan
I work with kids with severe disabilities and it really puts things in perspective for me. CF sucks but so do alot of other things. Life is for living so that is what we will do with the hand we were dealt. It could be worse, it could be better....
I do not feel guilty for giving our son CF, I feel sadness that he will have some obstacles but I am so thankful for the things I have given him- his beautiful smile, his huge blue eyes, his amazing spirit that lights up a room. He is our number one priority and for that reason, I do not think we will take the chance of another CFer who may compromise his health. Plus I work full time and it would be too much to ask my mother to care for two little CFers. We have tried IVF and PGD but it was unsuccessful. Perhaps we will try again or look at other options. I honestly do not think there is a right/wrong answer, it is so personal and subjective. Just be at peace with whatever you decide.
Megan, mom to Aidan
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LUCYJANE</b></i>We know it is only a 25% chance for the child to actually have CF.</end quote></div>
sorry but i REALLY hate it when people say this. 'only', like it doesnt matter, like everything should go your way, like the chance is really .00001%, like lets pretend we arent going to have a cf baby. its always 'only', until you find out your baby has cf. then its 'woops'.
anyway back to the topic. what claudette said was great. alot of things to think about. i dont know why you would feel offended by her post?
sorry but i REALLY hate it when people say this. 'only', like it doesnt matter, like everything should go your way, like the chance is really .00001%, like lets pretend we arent going to have a cf baby. its always 'only', until you find out your baby has cf. then its 'woops'.
anyway back to the topic. what claudette said was great. alot of things to think about. i dont know why you would feel offended by her post?
I am the anonymous who brought up the issue of discussing with family members the additional stress of having a second CF kid. I don't have two kids with CF, but I am related to a family with 2 CF kids. I brought my thoughts up to you because I know that having 2 cf kids in one family has brought a lot of additional responsibility and stress to our family (particularly to the grandmother). I really wish the parents had considered the rest of us in their decision. Though we do our best, helping our CF family without taking away from own kids has been very difficult - tho' we do the best we can - and the kids are wonderful people. I am anonymous for obvious reasons - I wouldn't want to hurt those kids for anything, but I do want to help you too.