Having more children?

anonymous

New member
Hi, I know everyone's situation is different but I would like to hear some thoughts on having more children after finding out that both parents are carriers. I have one daughter who was diagnoses after birth and since her diagnosis my husband and I have been so confused about what to do. I loved pregnancy, delivery, breastfeeding, etc and am so sad at the thought of never experiencing that again. I am open to adoption (I was adopted myself) but once again am sad at the thought of not experiencing the previous mentioned things. The thought of having another child wcf scares me death for many reasons (making eachother sick, managing CF for one is a LOT of work, expense, sadness, etc)... As you can see I am REALLY confused! Please share your thoughts and the reasons behind them!

Thanks!
 

anonymous

New member
Hello,

I can only speak for myself. I feel very strongly about this subject. I would never knowingly take the one in four chance and risk having another child with CF. I would not be able to forgive myself when they started getting sick. It is a very personnal decision - one you will have to make yourself with your partner. My husband and I are sad that there will be no more children without some help (PDG or adoption) but we would not take the chance. There is also more of a risk if you have two CF'ers in the same house. Just my thoughts. I know others disagree and that is ok. Thank you....
 

anonymous

New member
Here are some links on PGD that might explain it better. There have been a lot of questions from moms in your situation who have come to this board asking the same PGD question you did. While this site is good for 99% of things CF related, I have found that there is not much avilable-yet- on CF reproductive issues. Not to toot my own horn, but I am pretty much the expert here on Males with CF who are of a reproductive age and want to have babies, because I am currently going through the whole procedure and can relay my research as well as personal experiences. There is a woman on here named Hollycatherine who has created a website for females with CF of a reproductive age who are wanting to have a baby, struggling to have a baby...she has provided stories from herself and others, research, information and she is the one who CF females go do when they want to get pregnant...Maybe you will be the one who comes back and answers all the PGD questions. Here are a few websites that might be able to get you started because I honestly have no idea exactly what it entails.

<a target=new class=ftalternatingbarlinklarge href="http://www.inciid.org/index.php?page=pgd
">http://www.inciid.org/index.php?page=pgd
</a><a target=new class=ftalternatingbarlinklarge href="http://www.rmagenetics.com/
">http://www.rmagenetics.com/
</a><a target=new class=ftalternatingbarlinklarge href="http://www.drmalpani.com/pgd.htm
">http://www.drmalpani.com/pgd.htm
</a><a target=new class=ftalternatingbarlinklarge href="http://www.abington-repromed.com/our_services/content_layout2.cfm?pid=7
">http://www.abington-repromed.com/our_services/content_layout2.cfm?pid=7
</a><a target=new class=ftalternatingbarlinklarge href="http://www.lajollaivf.com/html/options.htm
">http://www.lajollaivf.com/html/options.htm
</a><a target=new class=ftalternatingbarlinklarge href="http://www.seattleivf.com/pgd.html
">http://www.seattleivf.com/pgd.html
</a>
I hope that some of this might help you,


Julie (wife to Mark 24 w/CF)
 

anonymous

New member
This really is a sad decision to make. My husband and I did have another child after Kait was diagonsed and i worried the whole 9 months. My younger daughter does not have CF, she is not even a carrier! I know that this is really rare and she was even born with a bowel obstruction!!! I did finally make the decision to not have any more children and this has really been emotional for me. I Love Kids!!!! If i could now have more children I know that I would.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
I know I could not have more children wit CF as others have also said but as stated Preimplantation genetic diagnosis is a real option. It is basically invitro fertilization but they test the embryos before they are implanted in the uterus to make sure you have embryos without genetic disease. It obviously a much more difficult way to get pregnant but you can have more children of your own. Although I have not done it yet I plan to proceed with the procedure.

anonymous
1child w/cf and 1 child w/o
 

anonymous

New member
I do not have any children, but I am a CF adult. I do not know what I would do if I were in your situation, however if I could have children (I can't have them, but it is NOT because of my CF) I would definately have them. Having lived with CF my entire life and seeing all the advancements since I was born - it would not scare me. Remember this is just my opion. The other part of this is that my family is maybe a bit unique but I am the 11th child of 11 children and I am the only one with CF. It has not shown up in my family anywhere else. I have 29 nieces/ nephews and 8 great nieces/nephews and none of them have it either. I'm not sure if that helps you or not, but I did want to give you one more persons point of view.

Good Luck with your decision what ever you and your husband feel in your hearts is the correct decision.

Rosie<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Hi,

My heart goes out to you.

My husband and I are actually discussing this issue right now too. We have two sons, one without CF and our youngest has Cf. We both love children and would love to have more, but are too worried about the chance of the next child having CF also. I too as someone else has already stated, would feel so guilty as I do with my youngest son. On the other hand, my husband (the optimist) belives that we are blessed either way. That if the Lord wants us to have another child with CF then we will, if not then we won't. I am very religous too, but as a mother can't decide that cut and dry. My youngest son has been such a true blessing to us and our whole family.

My prayers are with you during this difficult decision. <><
 

HollyCatheryn

New member
Thank you Rosie, for speaking up! WOW! Your parents must be incredible people! That's awesome. I would also like to contribute my 2 cents. I have CF and life at times has been hard, but I still want to live it. I cannot imagine my parents having decided that I might suffer too much so therefore my life should just not exist. My younger sister has not been diagnosed with CF, but she has at times been more ill than I. Many of the hardships that our family has endured in my lifetime have NOT been the result of CF. There are so many things to weigh, but life is a blessing. Children are a blessing. Even if your child only lives for a few hours or minutes or lives for years with difficulty, that life is precious and they have something special to give that no one else can offer. It would make me very sad to see fear cheat a family out of the beauty of a life with a(nother) child. The flip side of this is that there are some people with CF who live a basically "normal" life. I knew a guy like that growing up. He only had CF on paper - no treatments, enzymes or hospitalizations, etc. There is a lady in the Adults forum who is 36 and just diagnosed. My life has differed in the details, but the overall picture is pretty typical - school, college, work, marriage, parenthood. I've been blessed with health enough to even help put my husband through grad school!I guess the thing to remember is that CF does not ensure a tragic life nor does the lack of CF ensure health and ease. And it does help to have a strong faith that can anchor you and help you keep perspective.
 

anonymous

New member
Thanks Rosie and HollyCatheryn for your perspectives. My husband and I are expecting our second baby and she's already been diagnosed as having CF. We found out we were both carriers before we got pregnant with our first, and it was such a difficult decision to make whether to continue on trying to have a family as planned or to look into other alternatives. We haven't told all of our family about this new baby's CF, and I'm hoping that people don't believe it was "casual" or irresponsible of us to decide to have another child, knowing there was a 25% of CF. I may not be giving them enough credit, but it is a concern of mine.

Anyway, I appreciated your input, and although it is a decision that will be different for everyone, it's always nice hearing people with the same opinion as yourself!
 

anonymous

New member
Wow, its like I posted this dilema. My husband and I just found out that our baby girl Berlin has CF on February 1st, she will be 6 months old tomorrow. It was devastating to say the least. My approach to the question you have on your mind, is time. We have decided that it isnt anything we need to think about right now. Lets see how things go, and what we feel after a while. I thought everything in the beginning. Like how can I do that to my baby, we could have ten children that all have CF, why should I have a baby that could have this just because I am selfish and want more children. I always wanted a larger family, but this has already taught me so much. I know I can be happy if we dont have anymore children, but at this point I think we will have one more. I think we will try it once, and then CF or not, we will have another child that we love to pieces just like Berlin.
 

WinAce

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I can only speak for myself. I feel very strongly about this subject. I would never knowingly take the one in four chance and risk having another child with CF. I would not be able to forgive myself when they started getting sick.<hr></blockquote>

No kidding.

I can understand wanting to keep a pregnancy already with CF. Things like that happen, and there's no blame to go around. I will *never* understand, however, playing Russian Roulette with your future children's health. To be perfectly blunt, that's one of the most sociopathically reckless things I've ever heard of. As a parent, I'd want to give my kids every possible opportunity and head-start in life, not handicap them from the get-go or take unnecessary risks. If you really must have more children, why not take solace in the face you can give a loving home to some lonely, underprivileged kid, instead? :)
 

anonymous

New member
Winace is right, the quality of life, living with Cf is pretty dismal most days. People who are writing and not suffering from CF are taking the moralistic high ground. You as parents, are healthy, try living with CF! It is no ball game. We have limited lives, and yes I can hear you saying. but I want a baby!! For the love of God, there are homeless children everywhere, a better road to go down I would say. Yes that is my opinion and thousands of others, if they are being truly honest.
 

tapestry

New member
I have to disagree with winace on this one. Every pregnancy is a risk. Every one. As someone else said earlier, having a child without CF does not mean that that child will automatically be healthy. And just because a child has CF it doesn't mean their life is no longer worth living. My daughter was just diagnosed last Friday. My husband and I were devestated. Of course we don't want this for our daughter. But I know that even though she has this disease she is still going to have a full and wonderful life. Because her father and I love her so damn much and will do anything for her. Because God loves her and made her different and special - and yes he made her sick but I know he had his reasons for that as well. I may not understand them, but he had his reasons. My husband and I are going to try for another child. The thought of having another baby with CF scares me, but that is in God's hands not ours. Whatever he wants for us will be. Any life is precious. I am not going to let CF rob my daughter of a sibling, or rob this family of all its joy and pleasure. We will take whatever Gog gives us and make the best of it.

Good luck with your decision to the original poster of this thread - it's not an easy one, and definitely a personal choice each of us has to make. I will keep you in my prayers.

~Tapestry~
 

anonymous

New member
I could be one of the parents that was mentioned by the anonymous poster, so I don't know what it's like to live every day with CF. However, you should also read some of the posts from children and adults with CF that have talked about the rich lives that they have led in spite (or perhaps partly because of) the disease that they were born with. Read some of the responses that Emily has posted on this forum.
 

anonymous

New member
yes, right .... Emily's mother... I am being honest. There is very little quality to our CF lives, and little hope for a cure, I personally think breeding children with disease is wrong. Especially when there are children crying out for loving homes. Our lives are all about the choices we make.<img src="i/expressions/sun.gif" border="0">
 

anonymous

New member
I didn't see emilys mother post anywhere on this page, so who are you talking to? Just curious.

Julie (wife to Mark 24 w/CF)
 

WinAce

New member
Sure, every pregnancy is a risk. But you don't need to take <i>unnecessary</i> risks. Having a child without CF won't mean it'll be healthy--although, chances are, the most they'll have are some allergies or glasses--and yet, having a child <i>with</i> CF is imparting it with a virtually guaranteed laundry list of depressing health issues from early childhood on, alot of which you wouldn't want to wish on a worst enemy.

How this relates to already existing children, who aren't mere potentialities, is beyond me. No one's saying you should kill them or anything, or that their life is worthless, tapestry. Just that it'd be horribly reckless to take such gratuitous risks with a future child's life, when you could just as well scratch CF off the list of pitfalls your kids could face AND give a loving, warm home to someone who DOES exist and needs it now. I think you're just being defensive.

This whole topic is ridiculous. Come on, people! If you ask people who grew up in Soviet Russia under Stalin, (most) would still say they led worthwhile lives. But if you had a choice of having a child there, or in the US, what'd you do? If you had a choice between having a kid with cancer, and one without, which'd you pick? This <b>can't</b> be a serious debate. IMO (and I think it's a self-evident one), it's just being irresponsible to have more kids when you already know of such a strong possibility they'll be ill.

I would also suggest taking responsibility for your own risk-taking, instead of pawning it off on God. (You haven't stopped wearing seat belts, using smoke detectors or washing your hands because it's all in his hands anyway, have you?) If you have another kid with CF, you'll have no one to blame but yourselves when they start getting colonized with the scary bugs, or coughing up bloody foam. I doubt it's what God would want for you, just as he probably wouldn't want people to become heroin addicts, but you'll get to make the choice, and (hopefully not) find out first-hand.
 

anonymous

New member
This topic was not started to be a debate. This is a very valid topic that many CF parents do have to face. Although it is very cut and dry to some people, it isn't that way for everyone. I think it is great that people with different viewpoints have been able to share their thoughts on this topic.

At this point, if there are any other parents who would like to share their thoughts/experiences on this, I would love to hear them (that is if you are brave enough to share them!)

Thanks!
Original Poster

PS Thanks to those who have been positive/kind in sharing their views. No matter what choices we make in life and what cards we are dealt, it really helps to stay positive. I can only hope & pray that my child wcf will be able to have such a positive attitude throughout her life.
 
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