To take the 1 in 4 chance?

I

irishdavid

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

I am 26 wCF and if my parents could have made the decision to have me - a child with CF- or not I would have told them no.

</end quote></div>

Maybe i missunderstood what you were saying. If so I apologise. I didn't do so on purpose. I wasn't trying to start anything - I wanted to give the op my view as a pwcf.

I wasn't trying to start a where does life begin thing either and I agree that doesn't belong here.

<div class="FTQUOTE"><begin quote>And you're right you aren't anyone or anything so you are not missed, you're not missing anything etc...you make my point</end quote></div>

I'll have to admit you have got me here. I though my argument was fool proof but neglected to see, as you have pointed out, that if I wasn't here then I wouldn't know anything about it!
 
R

rcq925

New member
I have two children, Nathan, 5, who is a carrier and Hayley, 2 with CF. For me the decision is simple. I had my tubes tied after Hayley was born (NOT knowing that she had CF). We were done having kids period. We had major problems before having Nathan and Hayley, a miscarriage and a full term birth, our son Zachary, who died 4 hours after birth from Potter's Syndrome (rare disease, he was born without kidneys)

So we thought we had 2 healthy children (again not knowing about the CF with Hayley) and we were not going to tempt fate again, so I had my tubes tied when Hayley was born by C-Section. I can honestly say though that even if we wanted more children, I would NOT have anymore naturally or with PGD, I just would NOT take the chance of knowingly bringing another child that may have CF into this world. Now don't get me wrong, I love Hayley more than anything and I can't imagine my life with out her, but I don't think it is fair to the child to bring them into this world knowingly to face a life with CF. Now that said, I do not judge anyone who continues to have children after a CF diagnoisis, to each his own, although I admit I do wonder about some parents, who obviously have a lot of genetic problems (CF and others) I wonder why they continue to have children when they already have so much to deal with.

I know for a fact that I could not handle two kids with CF. I know that I am lucky that I have my son, who is healthy and no CF and that I had him first before knowing we carried the CF genes. I also feel so much guilt that Hayley gets so much more attention and requires that for treatments, ect. I think he feels left out alot no matter how hard we try to make him understand what Cystic Fibrosis is.

Anyway, that's my 2 cents. It is a personal decision that each person must decide for themselves. I know if I wanted additional children after CF that I would adopt. There are millions of kids out there that need homes, need someone to love them. Our best friends adopted a little girl from Guatemala and it has been a wonderful experience!
 
J

JazzysMom

New member
When I was still working & married to my first husband I had a patient (I worked at our local hospital) who knew I was a newlywed & asked when we would have children (rude I know, but I still answered her) so when I said never ~~ she was horrified. My first husband already had 2 girls from his first marriage & didnt really have a burning desire to have others & I assumed I shouldnt/couldnt/wouldnt. I didnt tell this patient that, but what she said to me was "What if you parents said the same thing". I told her that I guess I wouldnt be here to discuss it with her! Having children in general is a personal decision & when you thro the mix of CF or some other genetic illness in, its a harder decision, but never the less very personal. I personally wouldnt want the expense & hard ache for myself & the child if it can be avoided. Does it mean I wouldnt love my child? No. BUT I would use my info (presuming I knew of my being a carrier or I already had a child with CF) to the best of MY abillity & that means not risking it. I get a bit upset when some people keep pushing the odds, but its not my life so I should have no say!
 
A

anonymous

New member
I, too, was pregnant already with second daughter when first one was dx with CF. Unfortunately second daughter has CF too. I felt it immediately in my heart when she was born that she would test positive for CF. We wanted three children so bad, but I just couldn't get myself to take the chance again. I really never felt like I was taking a chance, because we didn't know we were both CF carriers when I became pregnant with either daughter. But when I knew, I just couldn't risk it. And sometimes I really do miss the fact that I didn't get to have the family I wanted, even though I love my two daughters more than life itself. I was just so worried about how unfair it would be to a third child, no matter what the outcome was. If a third baby had cf, then three would be difficult to care for medically. If a third baby didn't, it still would not be able to get the attention I felt like it would deserve because the other two take so much of my time.
I have decided to be happy with the family God has given me, and take care of each of them to my best ability.
It is just such a tough decision.
 
A

anonymous

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

I am 26 wCF and if my parents could have made the decision to have me - a child with CF- or not I would have told them no. <u>Don't get me wrong I have had a happy life and everything, glad I'm here, which I know sounds like a contradiction, but really life is hard enough adding this disease to the mix...uggghhh why do that to a kid?</u>....</end quote></div>

I thought the part I underlined kind of covered the fact that I'm glad I was born...however, i will conceed I didn't STATE exactly that.

littledebbie not logged in
 
A

anonymous

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

Okay, lets play a little game of would you.......



Would you put a single bullet in a gun, spin the chamber, and place this by your child's head before pulling the trigger. It's only a 1/6 chance that the bullet would be there. To make it a better comparison, lets say by playing Russian Roulette, this is the only way you will ever get to raise your child. Would you take the chance so you would get the chance to raise him?



After all, playing CF Russian Roulette you have a higher risk......1/4!



Just something to think about.</end quote></div>

Totally agree with you. Are you Sean by the way?
 
A

anonymous

New member
don't agree with you at all. maybe because i took the chance but ........ how many CFers live their lives according to statistics....better yet how many <u>people live their lives by statistics?</u>
 
A

anonymous

New member
The issue isn't whether a CF life is worth it...once a life is created it should be lived to the fullest, which for CF can be pretty good (although shorrt).

The issue is SHOULD you create a life that comes with these statistics, because although cfer's may not live their life BY them, the live constantly in the shadow of them.
 
J

JazzysMom

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

The issue isn't whether a CF life is worth it...once a life is created it should be lived to the fullest, which for CF can be pretty good (although shorrt).



The issue is SHOULD you create a life that comes with these statistics, because although cfer's may not live their life BY them, the live constantly in the shadow of them.</end quote></div>



I think the last part was perfect said!
 
A

anonymous

New member
I just find it interesting that many parents that choose to take the chance talk about medicine being better, better long term survival odds, ect.

What if the meds weren't getting better (there is no cure), what if you had to pay for all the treatment out of your own pocket.......would you change your mind?

I guess I am getting at the fact that we ALL pay for your decision to take the risk when it ends up that your 2nd child is born with CF. My insurance premiums go up to cover the cost, or deductibles are raised to help off set the cost. My taxes go up if you need assistance from the government, ect...

I see insurance and government assistance there to help with unforseen complications / problems....most people will have to use them during their lifetime, but they don't plan on it.

Maybe there should be some sort of clause in medical insurance, and governtment assistance that would deny coverage because the parents knew the risk they were taking, and why should we have to pay for your risk. But I know that would never work. Only the child would be hurt.
 
E

Emily65Roses

New member
Anonymous at 7:57pm:

There are other things that are currently covered that are more worthless than medications for a child. You're right, it would only hurt the child. And covering Viagra for prisoners? I'd say that's more worthless and a waste of money than covering CF meds for a child whose parents knew the risk.

However, I do see your point and I have to say I at least partially agree.

A good middle ground someone should suggest (Allie made this point to me, I agree):
If this clause comes into effect, insurance should instead cover PGD or adoption costs. If they covered PGD, I imagine the risk taking would be a lot less.
 
A

Allie

New member
I have to say I agree with anonymous, in regard to all manner of genetic disease, not just CF, especially with todays' screeings.

But I agree with Emily, stop all the other stupid things as well.
 
A

anonymous

New member
I'm that anon poster and I agree with both Emily and Allie. I just didn't want to expand the topic further than the issue of taking a chance on having another child with cf...but yes, stop all of the other stupid stuff we are paying for, and pay for adoption and PGD so parents can make responsible choices.
 
A

anonymous

New member
I just wanted to add, that I'm not advocating for insurance to put it that clause...just wanted to start you thinking about what kind of choices you would make if you were gambling with your own money.
 
A

anonymous

New member
I am in the same boat as the original poster, first child with CF what to do about having a second. I've spoken, argued, and attempted to get our insurance agency to cover PGD. However, they will not, under no circumstances. Let them know that they in the long run would be saving money by doing this. They don't seem to be interested in hearing this argument. So, adoption........having another birth child. Insurance companies really need to start really looking into what costs in the long run would be benefical.
 
A

anonymous

New member
I am a taxpayer and have worked all of my life... and i pay for others to sit on their butts....have 10 babies....not get married....boyfriend selling drugs on the street makes more money than i do and since i have never expected the government to take financial responsibilty for me or my child, than i can make any decision i want in regards to having more children.
 
D

dyza

New member
we had a gap of 12 years between our kids first was fine second has CF. We thought that we couldn't have any more children after our forst was born, hormone problems and the like, and we even looked into adoption and ivf. Then our son came along, With CF, and yes we thought have another, because we always wanted more kids. Its a realy difficult decision to make, dont come to it overnight, you will know in your heart wether you want to do this or not.
We decided against another, because of our age 39 and 38, i guess the decision was taken away from us
 
A

anonymous

New member
I had 3 kids when my then 6 year old was diagnosed with CF. A year later her older half sister was also diagnosed.

We decided then not to have anymore kids. So we adopted twins. Just a few months later we found out I was pregnant. I was on the pill. Delaney was born 9 months later happy, healthy and CF free.

Fast forward a few years later. I had an IUD and to us our family was complete. Surprise! I'm pregnant. We decided to keep the baby and Kaden was born at 30wks with multiple issues including CF.

So I guess God made the decision for us! I wouldn't trade Laney or Kaden for anything, just like the rest of my kids.

Yes CF is a terrible disease. But just because your child is born healthy doesn't mean they won't get some other terrible disease. I had a niece who passed away several years ago from leukemia...before that diagnosis she was happy and healthy.

Would I have gotten pregnant on purpose? No. But I am glad that I did. And looking back I don't know what I was so afraid of!

For what its worth, my oldest has MRSA...neother Skylar or Kaden do. Skylar and Kaden have S.Maltophilia but Ash doesn't. Skye and Ash have both culture pseudomonas but with different resistance/susceptences
 
A

anonymous

New member
I AM NOT A MOM BUT I HAVE FOUR FRIENDS WITH CF ONE OF MY FRIENDS HAS A BROTHER THAT DOESN'T HAVE IT AND SHE WAS BORN WITH IT,THE OTHER IS A CHILD OF 5 BOTHERS AND SISTERS AND SHE IS THE MIDDLE CHILD THE ONLY ONE WITH IT, THE OTHER BOY IS A FAMILY OF 4 BR AND SIS AND HE IS THE ONLY ONE WITH CF AND THE OTHER FRIEND IS A FAMILY OF 6 AND 2 OF THEM HAVE IT. BUT I HAVE HEARD THAT EVERY OTHER 4 HAVE IT I DO NOT KNOW THOUGH ONLY GOD KNOWS THAT YOU SHOULD TRY THOUGH NO MATTER WHAT YOU WILL LOVE THEM THE SAME IF NOT MORE IF THEY HAVE CF
KIM FROM SCOTTSBORO,AL
FRIEND OF 4 WITH CF
 
You must log in or register to reply here.
Top