To take the 1 in 4 chance?

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anonymous

New member
HELLO
I have a beautiful 19 month old little girl with CF. Her health has been pretty good so far with just 2 tune ups in hospital. But my husband & I are trying to decide if we shoud have another child or not. We have had genetic councelling & have decided that we don't feel comfortable with any of the tests that can be done before the baby is born. My husband wants to just have one more baby & just pray that it won't have CF. But I can't decide... I would love another baby, but taking that chance just scares me so much. I really don't want to have to children with this condition. I would love to hear from any other mum's that have have also struggled with this.
THANKS!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
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Nolimitmce

New member
this is a touchy subject but ill put my foot down and say...i would NEVER bring a chil;d into this world if he had a 25% chance of CF ..im sorry run the tests...there are so many alternatives now adays to avoid it and you already have the awareness.....how would you feel if your next child has CF and is in the hospital sick as anything and there is NOTHING you can do??? hate to be devils advocate i know a lot of people give you and me the you dont know what will happen ...everything is in gods hands....yeh yea yea whatever you say...then tell god to prevent your child or having a child with a strong chance of CF ...

mike

22/mCF

p.s. and im a mild case thats very healthy i just understand the mental repercussions even if everything else is hunky dory
 
A

anonymous

New member
We also struggled with this decision. I wanted to try for a second child and my husband did not. We talked for about a year. One day I just realized that I couldn't go through it again. Not to offend anyone that has made the decision because every family is different, but we decided that we needed to focus all our attention with keeping the child we did have safe, healthy and happy. We also didn't think it was fair to a second child if they were healthy because our eldest would always be getting more attention because of her medical needs.
There are days when I wish she had a sibling but it is not the decision we made. You need to do what is best for your family and only you can make that decision. You may also consider adopting, but again that is a personal choice...one we did not make.
I know that this subject often becomes controversial which is why I have chosen to remain anonymous (I usually sign in.)
 
A

anonymous

New member
having the "first" child with cf in both our families, makes me think we were incredibly unlucky to have had our son born with cf (though we would'nt change him for the world) if you consider the odds against " 1 in 4" or is it "4 to 1 "i am not a gambler!!!!!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">. there must be thousands of families out there who both have the cf gene and have been very lucky !!!!!!!! on the other hand there are families who have two , three, four children with cf and luck has, unfortunately gone against them. it's not really a help, i'm sorry, only you and your husband can decide what to do. best of luck whatever you decide to do. janet.
 
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JazzysMom

New member
I know that desire to have another child. You have to weigh the options & possibilities & look into your soul. I am the one with CF, but when we had to decide if another child was a good idea for us......it tore me apart. My heart couldnt wait to get started but my head said its not a good idea. My mind won & basically I am happy with what I have & didnt want to risk making things more difficult for everyone (hubby, me, daughter & possible baby). I realize that its not you with CF, but the idea is the same. I wish I could make the decision for you, but that is something between hubby/you that has to be done. Feedback is great, but its still up to you! Good Luck!
 
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anonymous

New member
We also have been talking about bringing another precious child into this world. Yes we do have a 1 in 4 chance of giving the awful genes to our child BUT other ppl take a risk also when they decide to bring a child into this world.....other birth defects that could NOT be detected in the womb. EVERYONE takes a "chance" when they make that decision. On that note....we also have thought about who would stay home when our son IS sick & in the hosptial. Their are sooooo many pros AND cons.....BUT NOTHING out weighs the love you will have & the bond your children will have with OR without CF. So we have decided to go ahead and try for a second miracle. This is just my opinion.....yes you and your husband will have to make your OWN decision, I am NOT by no means trying to talk you into saying "yes". (HTH)... let us know what you have decided
 
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Ratatosk

Administrator
Staff member
My husband and I have gone back and forth on this issue. I was holding his cousins 5-month old this weekend and got a little pang. She smelled so good! But from a practical standpoint -- we waited almost 10 years before deciding we were ready to be parents in the first place. Having just turned 40 I think we've resolved ourselves to the fact that DS will be an only child. We want to be able to provide for him financially and focus energy on keeping him healthy and happy. If I was younger, I'd seriously consider PGD, but I'm not and feel we'd be better off putting the money elsewhere. Haven't ruled out adoption either.
 
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anonymous

New member
That is only a decision you can make. You will find different opinions from people. You have to decide if you would be fine with two with cf. Our first child has cf and was diagnosed at one month. We had our second child when our first child was 25 months old. It was the best decision we could have made. He was also born with cf, but we wouldn't change our decision. He is also beautiful and is a joy. We do plan on adopting. The bottom line....it doesn't matter what anyone else thinks.
Sharon
 
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anonymous

New member
Like other people have said, you will need to decide for yourself wait you should do. But, you did ask for opinions so~

I beleive it would be selfish to try again knowing there is a 25% chance that the child will be born with CF. Yes every preganancy is a chance, but 25% is a huge risk. If you feel the need to have more children you really should consider adoption.

CF is a terrible disease, and until you have seen how bad it gets, seen someone cough up pure blood, struggle for every breath, live a life of constant struggle, and eventually die...I don't know if you can truely undestand the huge responsibilty you are going to burden another human being with.
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Like other people have said, you will need to decide for yourself wait you should do. But, you did ask for opinions so~



I beleive it would be selfish to try again knowing there is a 25% chance that the child will be born with CF. Yes every preganancy is a chance, but 25% is a huge risk. If you feel the need to have more children you really should consider adoption.



CF is a terrible disease, and until you have seen how bad it gets, seen someone cough up pure blood, struggle for every breath, live a life of constant struggle, and eventually die...I don't know if you can truely undestand the huge responsibilty you are going to burden another human being with.</end quote></div>

I understand what you are saying, we know CF is a terrible disease, but surely there are some positive things also, to weigh out the bad? Come on, don't be all negative. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
 
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anonymous

New member
We were SO lucky that our first child didn't have cf our second one does have cf. We also have been contemplating another child - but I will be very happy with 2 kids. Sometimes I think our lives are too busy for another one - but I know we could make it work! But if our 1st child would have had cf - it would have been very difficult to decide to have another or not. I am sooo glad my kids have each other - they are 9 and 12 and very close!! I know what you are going through - ti is very hard - I wouldn't want to do that to another child - FOR THEIR SAKE not mine! Even though my son has been very healthy - the future is so unknown and scarry!! I can't imagine life without him!!

Mother of 9 yrold boy wcf
12 yr old girl no cf
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>



Like other people have said, you will need to decide for yourself wait you should do. But, you did ask for opinions so~


I beleive it would be selfish to try again knowing there is a 25% chance that the child will be born with CF. Yes every preganancy is a chance, but 25% is a huge risk. If you feel the need to have more children you really should consider adoption.







CF is a terrible disease, and until you have seen how bad it gets, seen someone cough up pure blood, struggle for every breath, live a life of constant struggle, and eventually die...I don't know if you can truely undestand the huge responsibilty you are going to burden another human being with.</end quote></div>



I understand what you are saying, we know CF is a terrible disease, but surely there are some positive things also, to weigh out the bad? Come on, don't be all negative. <img src=""></end quote></div>




Why not adopt, that can have just as many positives! Even if the adopted child is not 100% healthy, I'm saying health = positive.

But why knowingly have another baby that has a great risk of having a horrible disease. If that child does end up having CF you are not the only one that has to live with it...he/she has to live with it more than you.

Has your current child grown old enough to know and voice his/her concerns with you.
Why was a born like this....I hate doing treatments, being different...I wish I would just die...

Not being negative, just being realistic.
 
C

CFHockeyMom

New member
This topic has been highly debated here. Everyone has their opinion. In the end, you have to do what you feel you can live with. Here are a couple of things you may want to think about...

There's a 75% chance your next child will not have CF.

Do you have the time to dedicate to another CFer (keeping in mind your next CFer may not be as healthy as your first)?

Are you financially able to take care of two CFers (not just now but in the future; many CFers live with Mom/Dad even into adulthood)?

Can you handle the emotional issues related with another CFer (again, keeping in mind that your next CFer may not be as healthy as your first)?

etc....

All in all, I'd say that if you and your husband cannot reach an agreement on this issue then I'm afraid, the answer to your question is no you shouldn't have another biological child. However, what about adoption?
 
A

anonymous

New member
Our first child has CF and is now 20. I decided immed after watching her struggling in an out of hospital, with drips etc that I did not want another child. I remember the night it happened and me who is not at all religious thought omigod this could turn into a pregnancy and the child could have cf but i feel if it is meant to be..it is. SO i did get pregnant..i didn't have tests as I couldnt terminate SO i went ahead.. dont know how we got thru 9 months.. and he doesnt have cf is carrier tho. My daughter has said ..how could you have done that knowing that he could have had CF. Thats selfish.. its not like you didn't have a choice.. blah blah

I just don't know the answer but with more research being done, better treatments, the median age being 40 if born today and cord blood, stem cell research..it is up to you..there is nothing like having a beautiful baby is there
 
A

anonymous

New member
Also note that CF bugs are contagious between pwcf. I have heard of cases of this before and the younger of two siblings seem to have a tough time because they get exposed to all the bugs that the older one already has. In some cases they are much younger/less developed and the bug effects them more. Once one gets a bug the other one would most likely get it as well. We have a hard enough time fighting off the bugs we get on our own, but now you are also going to get another set of bugs. In my opinion it is not worth the risk. It is also my opinion that by the unfortunate circumstances of having two children with CF you are further limiting both of their lives.
 
A

anonymous

New member
I have just logged onto this site for the first time ever - I have 2 children, my oldest is CF free but my little girl has cf and badly but I am considering having another child for many reasons but not taking the 1 in 4 chance - I have looked at Pre Implantation diagnosis and this seems a good route although the overall succes rates are not great and I am also considering the possibilities if we test during pregnancy (which I believe I would) and the results are not what we want - I could not bring another cf child into this world having seen my little daughter but I also don't want my son to end up alone - I am struggling with the options and have not made my mind up but I certainly have not rulled it out - look at all the options
 
J

julie

New member
Have you considered IVF with PGD?

It is expensive, but I have heard a few case of insurance companies covering it when a family already has 1 child with CF. It's more cost effective for the Ins. company in the long run to fork out $12-16k for IVF with PGD than it is for them to risk the parents having another CF child and paying for that childs costly delivery, medications, hospitalizations.... at $100k's a year. These people DID have to appeal an ins. company denial a few times but finally did get the IVF with PGD coverage.

My husband and I just did IVF because of his male factor infertility associated with CF, but had I been determined to be a carrier, we would have forked over the additional $2500 for PGD-even though we could hardly afford the IVF itself. Watching my husband struggle with CF, even though he is very healthy, makes me feel so strongly about not KNOWINGLY bringing another CF life into this world. If you have questions about IVF, I'm happy to answer them.

Absolutely no judgement to those who choose to take the chances again, I understand firsthand the desire to have a child and you will do what works for you and your family. But I would really encourage you to explore all of your options first.

Also, if your ins. will no cover IVF with PGD, there is an IVF scholarship out there. Go to www.inciid.org. It is called, "from INCIID the heart". It's a lenghty application time as they are all volunteers and only meet a few times a year to decide on choosen applicants, but it's worth it to send in your application.

Good luck with your decision,
 
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