To take the 1 in 4 chance?

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anonymous

New member
There are so many ways at looking at this topic and I really believe that it is such a personal decision which no one should be allowed to judge you for.

Something I saw today started me thinking. I was at the hospital (I was actually babysitting a friends little boy who did a great job of breaking his leg) and I saw a 16 year old boy sitting up in bed talking in 2 languages but quite clearly had a learning disability.....I soon overheard that he has spina bifida. Now to me that is a disease that I generally think of as having no quality of life yet this boy was sitting up on his own and speaking in 2 languages???? The fact is how can we be sure of anything. Life is a gamble everyday for thousands of reasons - yes we can try to limit risk but we can't eliminate it.

Just to start sparks flying in here I will voice the question I have had on my mind lately being one of those who thinks "well I have two children with CF, can I risk another one?"

My question is if mdeical science show vast improvements in gene therapy and it was said that stem cells from a healthy sibling could cure the CF in your other child/children, would you then risk the odds? .....please don't anyone bother saying "you can't create a child just for that reason because any mother knows you would equally create the child for love....seriously you would be wasting your time. The question has been on my miond because I believe it is a very real direction that science is heading in. It is clear so far that it will be easier for gene thereapy to cure diseases that are triggered by a single gene whhich means CF will be at the top of the list.
 
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anonymous

New member
Hi - my daughter Amy is 24 years old. She has CF and when she was young we wanted a
second child. I tried to get pregnant for a while but never did. I can tell you that now, looking
back and seeing all the pain our daughter has gone through, physically and emotionally, I don't
think you, like me, could live with the guilt there would be if a second child had CF. With your
first baby, you didn't know. This time you'd be consciously having a baby knowing that baby
would suffer alot.
 
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anonymous

New member
Imagine if I asked you to give me all of your savings to invest (a heavy duty decision) and told you that you had a 75% chance of it making money or, at best, staying even. But, there's a 25% chance you'll lose money. I doubt that you would take me up on that offer. And yet, many people are willing to take that 25% chance with someone's life. Willing to take a 25% chance of bringing a child into the world who will definitely be saddled with a lifetime of heavy duty meds and treatments. But wait, you say. There are new discoveries being made. Yes, well there are new ways for me to invest your life savings if you'll just give it to me also. Funny how we spend more time and thought on our money than we do on a human life.
 
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semjem65

New member
I have a 10yfw/cf and I can't imagine having other child. what these kids go thru is to much to bear. I know it's not am easy decision but think about carefully. My daughter was dignosed at birth and the first years where not so bad, lately she's been really sick. I dont know if you have had any hospital stays all it takes is one. I feel so guilty seeing laying in that bed say what did she do to deserve this. Hopeing that Im wake up from this nightmare and she won't be in that bed. If I only knew I would have never became pregnant and you have the knowledge that this can happen to other of your child. If you can live with your chooses then do what your heart tells you. Sorry for being blount.
 
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mtmonroe

New member
I have stated this before in the "adult" section. I have CF and I have a 41/2 year old daughter who DOES NOT HAVE CF. My husband is a carrier of CF. We had a 1 out of 2 chances of a baby having CF. We were very blessed with a healthy child. I would love to have another baby. We have chose not to.
All I can say is we are very blessed and cherish every day we have togerther.
Best of luck in waht you decide.
 
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anonymous

New member
I have four children and only one with cf. BUT the one with cf was our last child. I am very thankful that I was done having children when he was born. I am so glad I did not have to make the decision you are facing. My heart truly goes out to you. I can honestly say that I dont think I would risk it if I had to make the decision to have more children. But that is easy for me say since I have four children. I believe that this is a decision you and your husband have to make and no one should judge you either way. Remember life is hard but God is GOOD!!!!!!
 
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annonymous

New member
No one can make that decision for you, but having a child is never a mistake. We are all valuable (CF or not) and we all have wonderful gifts to offer to this world. It may be hard to watch people suffer, but there is no guarantee of the severity of the disease or that they will have the disease at all. Besides, we all suffer in life at times, with or without CF. We are all fighting our own battle in some way or another....

Good luck to you!
 
2

2005CFmom

Super Moderator
This is a very easy question for me to answer. There is no way I would purposely get pregnant knowing of the 1 in 4 chance of the baby having a CF. My oldest daughter wasn't diagnosed until she was 8 years old, so by that time we had already had our second. Thankfully our second daughter does not have CF. And we had already decided she was going to be our last, before the CF diagnosis came.

Everyone knows that in every pregnancy there is a risk, and as parents we would love and care for our child no matter the outcome. But every pregnancy is not a 1 in 4 risk....those odds are just too high a chance for me to take.
 
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anonymous

New member
I have an 8yr. old son with Cf and a 18 mo. who does not. It took 7 years to decide if we wanted another child or not. We looked into IVF and it wasn't for us. With a lot of praying we decided to try. We had alot of people praying for us and our unborn baby to be born healthy! Our prayers worked! The Lord won't give you more then you can handle! Trust in him! We just prayed for his will to be done with our baby. Sure I was scared throughout my pregancy but my pastor said to me "Don't let the fear overcome you"! And if we had another baby with CF we were prepared for that! My son has a mild case and does well! Only hospitalized 3 times for tune ups! It is a hard decision, but have faith!! There are sooo many new therapies that are going to be coming out! It's very encouraging!! My son new from the beginnning that his brother could or could not have CF. Sure he was a lillte upset that he didn't for 2 minutes but has never said it's not fair!! We were very straight with him. In fact he wants to have another brother/sister!! I am religious and God has a plan for all of us and I don't know how I would get through rough times without him. I put my son and his health into his hands and just pray for him to help take care of him and my family! He knows our needs and wants. Just pray to him and pray for peace when you make a decision. Ours was answered 7 years later. He knew we would have another son! I hope this can be an encouragement to you!

Darinsmom
 
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anonymous

New member
anonymous, ever hear of secondary insurance? The child would be hurt because of people like you who probably want the Med. ins. clause. selfish!
 
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anonymous

New member
What if the second child grew up in and out of the hospital much sicker than the first child ever was. What if she or he was in the hospital and looked you in the eyes and asked you "how you could ever have done this to me? How could you have even taken the chance to put me in this much pain?"

Could you answer back confident you did the right thing?

I only ask because that is what I would have asked my parents if they had any idea I could have CF. I hate the disease and am terrified of what is yet to come and i know that I could never answer my child back if I made that choice

Sue 24w/Cf
 
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anonymous

New member
I have two daughters with CF. They are 12 and 10. Did I plan it that way - no. I did want a 3rd child but never thought I would have another with CF. I believe that people with CF are special gifts from God and I didnt really feel worthy of having two special gifts. Yes, I was very shocked and depressed to learn that my new baby would also have CF. But, I must tell you that my daughters are so close. They have such a tight bond and so much in common to deal with and share. Last week they were watching a show about dwarfs. The mother was pregnant and about to find out if the baby would also be a dwarf. She already had one child with dwarfism. The mom made a comment that of course, she wouldnt want the child to be a dwarf but then again if the child was a dwarf the two siblings would have each other to turn to, etc. I then overheard my younger one (Tina) telling her older sister (Tara) yeah, we wouldnt want to be alone with CF. My daughters are very, very happy. They lead a full life. We live each day to the fullest and dont dwell on negative thoughts. We have had many ups and downs but the happiness that we share as a family <b>far exceeds </b>the bad times. I meet so many people that are just plain miserable for such stupid trivial reasons. CF has taught our family what is really important. I feel blessed and I really feel that CF has made our family what it is. I think we have so much more than alot of "healthy" people. It is definitely a personal choice but I know if someone told me I had a 75% chance of winning the lottery -- I am going to buy the ticket!!!

I wish you the best. I just wanted to give you a look from the other side. PS --I cant imagine my girls ever being mad that they were brought into this world with CF compared to the alternative?? Deb<img src="i/expressions/heart.gif" border="0">
 
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anonymous

New member
I have an eight month old with CF. My husband and I plan on doing PGD for our next pregnancy. If for some reason PGD does not work, we have talked about the 1 in 4 chance and we will do it. The reason is is that the love we feel for our son and the joy we have with him outweighs all the CF stuff. I also feel very strongely that what the CFF is coming up with will greatly impact my son's life. Look at all the 30, 40, even 50 year olds today. I believe when my son is that age we will be talking about all the 60, 70, and 80 year olds. I'm not in a dream world though, I know CF is not ideal or easy. I just can't imagine this world without my son or the experience of siblings for my son.
 
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JazzysMom

New member
I think what is getting lost here is what the kids think.....yet at the same time how can it be known if in order to find that out they have to be born, raised & asked. I must have this part of my emotions turned off because if my Mom told me that I would have been terminated had she known about my CF, I cant say I would be upset. I just wouldnt be here. To me its as simple as that. If I had CF & they tried for another after me & found out that one had CF & decided to terminate that one then I still cant say it would bother me either. I dont think I would have the right to judge them for not wanting to raise or have a child deal with CF. Now if we are talking wanting a different eye color that is different. I do believe children are gifts & I "like" to believe that we arent given more than we can handle, but I have to admit that this theory seems stretched at times. If it was me & I had to choose to have another knowing the risk....I wouldnt. Of course I am not faced with that decision so its easy for me to say now!
 
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JohnnaMarie

New member
Anonymous:

Before we decided to have children we went and got tested to see if my husband was a carrier. We used Ambry Genetics to get our test done. We had long decided that if he was a carrier we would not have children. We were fully prepared to not have children or to adopt children. We would be sad, but it would be best for us. We felt it would be hard on my health to care for an often ill child , having CF myself and it is so much pain to put a child through. My brother also has CF and it is painful enough for me to watch him suffer let alone to bring a child into the world with such a chance of getting the disease too. It was a gamble we were not willing to take.

I know this is a choice that every family has to make based on their own situation. There are many families out there that are dealing with this disease and watching their children suffer with it. I admire their courage and strength. I send much love and continued health and strength to fight this disease to each and everyone of them.

I hope I have not offended anyone, this is just my view on it.
 
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anonymous

New member
To me it sounds like the ones deciding to take the risk are the selfish ones. No one is saying that you can't love a child with CF, we can and do. But you are bringing someone in this world to suffer because YOU feel the need to love them. Sorry, but that sounds selfish to me.

And don't even start with the "but something else might go wrong and they end up suffering...so CF isn't any worse"

Yes, something else might go wrong......but is it a 25% chance of something else going wrong, NO. So you cannot compare the two.

Afterall that is what we are talking about....a 1/4 chance.
 
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anonymous

New member
Our second child has CF but our first does not. We had pretty much agreed that 2 would be enough for us but we for sure agreed on that once we found out our daugther had CF. It was a total shock - we had no idea we were carriers and we found out 2 weeks after she was born that her tests came back positive. Im happy to read some same have mild cases and have not been in the hospital much, but for us she's only 5 months old and has only been home a total of 4 weeks her entire life. I would in no way risk putting another child thru that. Like someone else said - there are plenty of children to adopt and who need wonderful caring families.
 
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Jem

New member
<b>I have two daughters with CF. They are 12 and 10. Did I plan it that way - no. I did want a 3rd child but never thought I would have another with CF. I believe that people with CF are special gifts from God and I didnt really feel worthy of having two special gifts. Yes, I was very shocked and depressed to learn that my new baby would also have CF. But, I must tell you that my daughters are so close. They have such a tight bond and so much in common to deal with and share. Last week they were watching a show about dwarfs. The mother was pregnant and about to find out if the baby would also be a dwarf. She already had one child with dwarfism. The mom made a comment that of course, she wouldnt want the child to be a dwarf but then again if the child was a dwarf the two siblings would have each other to turn to, etc. I then overheard my younger one (Tina) telling her older sister (Tara) yeah, we wouldnt want to be alone with CF. My daughters are very, very happy. They lead a full life. We live each day to the fullest and dont dwell on negative thoughts. We have had many ups and downs but the happiness that we share as a family far exceeds the bad times. I meet so many people that are just plain miserable for such stupid trivial reasons. CF has taught our family what is really important. I feel blessed and I really feel that CF has made our family what it is. I think we have so much more than alot of "healthy" people. It is definitely a personal choice but I know if someone told me I had a 75% chance of winning the lottery -- I am going to buy the ticket!!!

I wish you the best. I just wanted to give you a look from the other side. PS --I cant imagine my girls ever being mad that they were brought into this world with CF compared to the alternative?? Deb </b>


To Deb...I just wanted to say thank you for your post and that I think it is your children who have won the lottery in having a mom like you!<img src="i/expressions/heart.gif" border="0">
 
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