Please, I need some help (2 terminations mentioned inside)

[anonymous]

CF is a bit more than a cold, dear. It's something that makes life extremely difficult and eventually kills you. And living on borrowed time can be a cause for much frustration and anger when they reach thier adult lives. It's about more than you raising them, it's about what they eventually have to face. At least try to see the other side

Allie 32
Ahava 4, no CF

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>It's about more than you raising them, it's about what they eventually have to face. At least try to see the other side<hr></blockquote>

Is that the other side? Consideration for the child? Come on, now. Be honest. That sounds like the plantation owner's defense that slavery was better for the slaves than what they would have to face if freed. Even if it were true in some instance, the argument was still disigenuous.

Q

 

[anonymous]

-ingenuous.

 

[anonymous]

I think most people's genuine motivation is to not have thier child suffer. I see your side, I do. I'm just saying there is another just as viable one.

 

[anonymous]

^

Allie

 

[WinAce]

<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
WinAce-

If you don't mind me asking...

Why did your siblings die in infancy?<hr></blockquote>

It's been a long time, and I wasn't around when that happened, so it's all hearsay that I got from my parents (and may have bastardized in memory). Anyway, I think one of them had meconium ileus and faced two rather gruesome operations (in infancy) that didn't help. My baby sister, on the other hand, lived two months--double the time--but succumed to pneumonia.

They never had a chance to experience anything that the world had to offer, instead being relegated to hospitals for the entirety of their short lives. Their deaths taught my parents nothing about taking stupid risks with blind forces of nature that couldn't care less about hopes, dreams or lives. Unfortunately, their lives and deaths were entirely in vain.

A gruesome reminder of what can happen in circumstances like the OP's.

 

[anonymous]

WinAce-
Thank you for replying, and I'm sorry for the loss of your siblings. I can understand your strong feelings on this subject, however I am guilty of having a child knowing my husband and I both carry the gene. It was an accident but I suppose if I had gone through with the tubal like I had originally planned then my baby Andrew could have avoided this nightmare. I have blamed myself as much as I have the incompatent physicans that handled my care. I could never dream of putting another child through this, but I must admit my heart aches for another baby, its horrible pain to have an empty room where my sweet baby should be. And with his horrible injuries I know he won't live long.
Jen

 

[Lilith]

For the record, I don't see anything wrong with the OP wanting to have a healthy baby. Maybe you think it's selfish, but I don't see it that way. Wouldn't you want your child to be as healthy as possible? Saying that she wants a baby doll that never gets sick is just rude and insulting. Everyone gets sick, and I think the OP knows that... Yes, the child could develop any other type of illness, but if you KNOW that they're going to have CF, you can at least make a choice when it comes to that. And I don't see where comparing CF to getting hit by a car really counts. CF is pedetermined by genetic mutation, and it's something you continuously have to live with... Getting hit by a car or being murdered isn't.

To the OP: As young as I am, I can understand to a degree what you feel. I've sworn off children for the very possibility that they could be born with my disease, and I would not want to subject that child to such a disease. I've been through enough torment (both physical and mental) to know that I would never want to subject someone I love to such a terrible thing if I can help it. I've seen the hardships my family has gone through for me, especially my mom having to battle drug companies and insurance to get me what I need. But on the other hand, having a child with CF could be a blessing in disguise. Yes, this disease is a curse, but because of that, I think a lot of us have learned to appreciate life a little more and have become stronger people because of it. Also, like someone else said, even if your child is born with CF, their case may not be as severe as others. It is ultimately your decision, though. If you don't want to take the risk, then don't have the baby. But as Emily said, the chance of producing a CF child is moderate, so if you keep trying for a healthy baby, you may have to repeat this process over and over until you get lucky. Do you really want to go through that again?

 

[anonymous]

First off, thank you to Allie and Lilith. Lilith, you sound like such a mature young lady. Your parents must be very proud.

To those of you who felt the need to 'threaten' me that my sweet daughter could 'easily' get another disease, car wreck et al, God help you for saying such evil things. I can't imagine that you have children. If you did, you MIGHT understand that any parent DREADS the thought of a healthy child getting sick EVERY SINGLE DAY with a laundry list of things that could go wrong from the moment they wake up, walk out the door until they're in bed. That's what parents go through with healthy children!!!! I can't imagine compounding that fear by starting out, knowingly no less, with a sick child, waiting for the other shoe to drop.

I came here for support and so many of you have been horrible. I'm sorry you're suffering. Perhaps you think I'm taking the easy way out by not having this child. Live a day in my skin and maybe you'll see differently. But that's WHY I tested in the first place...to avoid needlessly torturing a child.

I thank those who could step out of themselves long enough to listen and non judgemently comment, whether they agree or not.

For the rest of you, as awful as CF is, there will be a cure some day. There will NEVER be a cure for whatever goads you to say such evil things to someone who came looking for help.

Please don't continue this discussion. If you have more venom to spew, go hit a pillow instead.

 

[Emily65Roses]

I wrote this on your other thread, but here:

Eh, people are going to be terrible no matter what you come here for. Not making excuses of course, just saying. I've gotten some serious attitude on several occasions.

Just wanted to say don't let it chase you away. If you still want to come here to ask questions or whatever... do it. You are going to get people like that poster, but you're also going to get people like the majority of us who will offer advice, even if we don't happen to agree with whatever you're doing. I hope you don't let a few rude people scare you off.

 

[Dea]

Its funny how you can see a topic like this...and know what is going to be posted wtihout even reading them. I just wanted to say to the original poster, that I am sorry you have had 2 pregnancies with CF. I am a mother and I have CF....so I can also see both sides of your situation, although I dont agree with the outcomes you chose. I know as a mother, they must have been hard decisions. Each of us with CF can tell you that CF has made us who we are....and honestly I cant say I would change my life. I truly believe I am a much stronger person because of it. I dont take anything for granted and see life as a wonderful thing....no matter what I was dealt. I dont believe God is punishing you...and I hope you dont either. You have one wonderful healthy daughter...put everything you have into her. You will only be hurt if you keep trying to have another child and the outcome remains the same. I am the oldest of 3...and there are 2 of us with CF. You may never have another child without CF...why risk it if you dont want a child with CF. I wish you the best...
Dea
32w/CF

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br> There will NEVER be a cure for whatever goads you to say such evil things to someone who came looking for help. Please don't continue this discussion. If you have more venom to spew, go hit a pillow instead.<hr></blockquote>

You're free to initiate any discussion you like. You're not free, however, to end it simply because you don't like the ideas people are exchanging not only with you but with one another. You had to have known your post would strike some nerves. In fact, posting it <i>here</i> leads me to believe you <i>wanted</i> to strike some nerves. Do you really expect people with CF to uniformly "support" your suggestion that a life with this condition is nothing but "needless suffering" and that they ought to have been "spared it" in the first place by the likes of you? Nice conversation-starter, but enough with the fake indignation already, eh?

Q

 

[anonymous]

My heart aches for a child. My husband has CF and is infertile. We will never have children, but if we could we would. If someone is willing to take the chance of getting pregnant knowing they carry the CF genes, then in my opinion, they should be willing to have the child and care for it. But to keep getting pregnant and having abortions after finding out it has CF, is just wrong in my opinion. If you want a child that badly but don't want a CF child, then have the procedure that can rule out the eggs/sperm that carry the gene. Do you know how many infertile couples would welcome a child regardless of CF? I understand "accidents" happen, but to just keep trying and keep aborting, I don't understand at all. Yes, CF is a bad disease. But some of the most wonderful people I have ever met have CF. I wish they didn't have it, but I am glad they were born.

 

[Allie]

Have you tried adoption? My husband and I adopted, and my daughter is the absolute LIGHT of my life. If your heart aches for a child, please at least look at adoption. You are taking in a child that someone else didn't want, and you will love them and appreciate them so much. My daughter is the most important thing in my life. I hope you find some way to raise a child with your husband.

 

[anonymous]

Instead of abortion, I do know a loving family that would be honored to take care of a CF child. They have four children right , 2 with CF. CF will be beat, matter of time, but right know for all the kids and adults, they are coming out with more new medicines to keep them healthy.But Until this happens we just keep them healthy.
If you feel you cannot handle CF, some people cant, I do have a family interested. Just e-mail at funtownusa@aol.com

 

[WinAce]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>WinAce-

Thank you for replying, and I'm sorry for the loss of your siblings.<hr></blockquote>

Well, I appreciate that, but I never knew them. As far as I'm concerned, their story is no more or less tragic than that of thousands of others. And at least it ended quickly... I feel very sorry for you having to go through the same thing as my parents did, though. No parent should ever have to face such grief. I'm not a fan of blaming yourself for anything, though, even if you're in the wrong (and I doubt it, in your case, given that it was your first and you really had no experience with this illness). Just... good luck.

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Q</b></i><br><blockquote>You're free to initiate any discussion you like. You're not free, however, to end it simply because you don't like the ideas people are exchanging not only with you but with one another. You had to have known your post would strike some nerves.
Q<hr></blockquote>

I second that. You can't blame anyone for getting hurt on an issue such as this. And by the way, OP, you're missing the point of so many posts on here. People aren't being horrible. READ AGAIN. A majority of people aren't trying to attack you, but simply give advice.

 

[kybert]

ah boy. how did i know people would start getting on their high horses on this thread. the poster never asked for anyones opinion on her decisions about her pregnancies. to that poster, no ones punishing you. its all about chance. if you feel you cant handle cf, and that is perfectly fine, then you have made the right choices. but as others have said, if finding out your baby has cf and then aborting everytime makes you feel like poop then perhaps you should look into other options or focus your time and energy into you daughter. you obviously cant go on like this. please ignore the people who try to make you feel guilty. theres a little something called <b>choice</b> in many countries and people should respect it. anyway, im sorry you have to keep dealing with this. unfortunately alot of families face this and abortion or not, it still ends in tragedy.

<blockquote>Quote<br><hr>As an aside, comparing a disease which robs your very breath, gives you diabetes, haunts you throughout childhood (only becoming worse through adolescence and adulthood, when you should be enjoying yourself the most) and ultimately kills you to poverty is just plain condescending. CF is about as wicked as they come, so let's not pretend it's just a walk in the park or mundane "challenge." The sooner no kid has to deal with it, the better. <hr></blockquote>

took the words right out of my mouth. i dont like the way people downplay cf. even im guilty of doing it.

 

[JazzysMom]

I personally cant say what "I" would or would not do if I wasnt the one with CF & my unborn child might be. I bounce back & forth on the benefits of technology that offer an option so that you & I can have a "healthy" child. Part of me feels that it is good & the idea might help alleviate the illness eventually. The other side says that every life (born or unborn) is precious & who are we the ones to pick & choose. I refer back to yonder years where we didnt have the option of knowing, we were given what we were given. Some would arguge that NOW we do have that option so lets get the benefit of it. Just like I didnt want to "push my luck" with having another baby because of my CF, I dont think I would "chance" having another pregnancy & have to end it if I was trying for a child without CF. I am not 100% sure my post makes sense because the whole topic has sturred a lot of emotions up for me. I remember one time after I got married to my first husband, an old lady asked me if we were going to have children. I said no & she was horrified. She said how would you feel if you parents thoughts the same way. I told her I wouldnt be here to worry about it I guess. I think my overall main concern for you is not just your emotional well being, but your physical. It can not be good for your body to get pregnant, terminate & possible continue this cycle. Whatever you decide (which is 100% the choice you/hubby have to make) I wish you the best. Everything I wrote is my personal opinion & my no means is meant to pass judgement. Good Luck!

 

[anonymous]

Even if people are saying mean things to you OP, come on what is really worse? Saying mean things or doing them? I would certainly consider killing an innocent baby (bc you are selfish) meaner than me saying you are selfish!! DUH! You need to take a SERIOUS look at yourself, not only for yourself, but for the daughter you have, the baby you have already killed, the baby you are about to kill and most likely the babies you will kill in the future.

I have one more word for you: STOP.