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

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anonymous

New member
Hello,

I have lurked on this board for awhile and posted once before after we learned that the baby I was carrying was testing 'positive' for carrying my CF mutation and an 'apparent' mutation that my husband carries (Ambry test). We decided to terminate the pregnancy since we felt that we couldn't handle it, nor did we want to subject the baby or our 2 year old daughter (CF carrier only Thank the Lord) to this as well.

I am NOT making judgement on other people's choices, I just am looking for someone to talk to.

We got pregnant rather easily about two months after our first termination and just found out on Wednesday that we fr&*&^()())-in' rolled 'snake eyes' again. This baby has it well.

I am so sad, I feel so cursed, I feel like God is punishing me.

We are planning on the same course of action, but I feel like I want to die. My heart is breaking in half. I feel HAUNTED by this miserable disease...WHY won't it leave us alone.

I'm sorry if this is inappropriate for this site. I just thought maybe someone out there might understand and could share a thought with me. I feel so bad for my daughter. All she sees is her mommy crying. I just wanted us to be happy. I feel like this is all my fault and that I have poisoned everyone's life, including my own.

Is anybody out there?
 
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anonymous

New member
Without getting into the disucssion of pro choice or pro life, I have to say that yes, life can be hard with CF - and there is no telling what your child's life might be like. If you cannot handle the chance of illness and the responsiblity of caring for a possible sick child, then perhaps you are doing the right thing. No one wants a neglected CF child out there - however, I am sure that us here are all glad that our paretns did not terminate us as we are all beautiful and productive members of society. Some of us are sicker than others, but some of us are relatively healthy. My opinion would be stop trying to have babies if you aren't willing to take the risk, or open your heart to your CF child and learn that life with CF can still be beautiful and meaningful.
Wanderlost 28 W/CF
 
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anonymous

New member
what if the test missed that the child had cf, but once he/she was born it turned out they did? god gives you a challenge because he knows you can handle it.
 
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anonymous

New member
hello, I just wanted to tell you that although I have never been in your position before, I can feel your pain. My husband has CF, and we have been trying to have children for a while. The chances are very high that if we do have a child, they wil lhave CF as well. I am willingto take this chance however. It is a disease, but soon there will be a cure for it. if you do have a child, by the time the are 10 or less, there will probably be a cure. Also, every year my husbands medicine gets better and better. If you don't want to take this chance, maybe adopting is better. I'm sorry you have been so upset. I will be praying for you.
 
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wallflower

New member
I am sorry to hear that you are having so much trouble. It is natural that you want your baby to be healthy - no parent ever prays that their child will be born sick. I was the first born in my family, and it took my parents 7 years before they were willing to try again (knowing that there was a 25% chance that baby would also have cf). My sister, and later my brother, were both born without cf. As a carrier, it is just the chance you will have to take. As far as it being your fault and making everyone unhappy...it takes BOTH parents to make a cf baby (literally), and nobody can be held at fault for what nature has predetermined. If it is proving to be too much, take a break from it for a while and cherish the child you do have. Or you could persue other means of having more children, if that is what is most important.

Do you know anyone with cf in person? The reason I ask, is that people I have met often have such a different impression on what life with cf means. Once they meet me (the first thing I ALWAYS hear is: but you don't look sick...), and hear/see what I do to stay healthy, they always come away with a different impression. One suggestion I would have is to check out where your closest cf center is - they usually hold conferences every year. You could attend a conference to see what is going on in the world of cf and view cf people that are there.

I'm not saying this to try to get you to change your mind about having a cf baby, but it may help you understand in a little brighter light what cf actually means for people (and not what is textbook). Whether you choose to have a cf baby or not, is your family's choice. But remember that your attitude about it will affect your daughters perception about it as well, especially when it is time for her to make the same choices.

While I have not become pregn. myself, it is something that I think about a lot. Having cf guarantees my child would be a carrier, but not necessary that it will have cf. At 33, I am craving to be a mother already, but I do worry about not only my health, but what I would do if my baby was also born with cf. While I would still have her and love her to death, I would still be very sad that she would have to face that future as well.
 
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CFHockeyMom

New member
Terminating a pregnancy is certainly a difficult choice. Although not something I would consider for CF, I may consider it for other issues. Everyone is different. I wouldn't trade my CFer for the world however, my husband and I made a conscious choice not to have any more of our own children knowing the CF risks. Other people have felt differently and made different choices. That said, I pass judgement on you for terminating your first previous CF pregnancy. However, choosing to try again knowing the risks and knowing how you felt about raising a CF child was irresponsible and to terminate this pregnancy seems like using abortion as a form of birth control.

Have you considered the possibiltiy that maybe you and your husband are intended to raise a child with CF?
 
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Mockingbird

New member
God is not punishing you. if you believe in God, then you might want to consider maybe he wants you to deal with CF. Life was never meant to be easy, In fact, I believe it is only through trials that we can become stronger. besides, a lot of people don't think they can deal with CF when it enters their lives, but in the end they do. =-)

You said you feel haunted by CF. It kind of reminds me of a story about a man who lived in terror all his life because of a ghost in the next room. The ghost would let out a most terrible screech and every night the man would jump out the window in terror and spend the night in a cold shed. his life was really miserable because of that, and in the end he died at a rather young age because he was so overstressed, and I doubt spending all those nights in the cold and wet did him much good either. Well, time went on, and another man bought the vacant house. Durting the first night, he heard the ghost as well. Now, this man was just as afraid, but he knew if he were to jump out the window every night and have to slee4p in the cold and wet he would be very miserable, so instead he decided to face the ghost. It was not easy for him to get into that next room, but when he did he found there was simply a shutter loose which was making the noise each night. he fixed the shutter and had a comfortable night from then on.

I paraphrased a lot, but that's the gist of the story. =-) As for the baby having to deal with CF, we all have our battles. For some people it is something like CF, or Lupus, or fibro or any number of things. A lot of people have to deal with starvation, others have to deal with abuse, others poverty, or struggles with alcoholism, or drug abuse, or whatever else. Any number of things can happen we don't have any control over, and CF is only one of them, and not nearly the greatest.

Anyway, just something to think about. I'm not trying to condemn you or anything. Just trying to say that CF can be a curse, or it can be saimply a fact of life like so many others. It all depends on how you deal with it. =-)
 
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miesl

New member
Really, I don't think this poster came here looking to have fire and brimstone judgement passed upon her. If she wanted that, she'd be posting on a pro-life board.

That said, if none of you have anything supportive to say - DON'T SAY ANYTHING. You may not agree with the poster - THAT DOESN'T MATTER. This is not a debate forum.

To the OP - the choice is yours. As other posters have stated, not all CFers have the same disease severity. You have three options, carry to term and raise the child yourself - knowing that CF is unpredictable, carry to term and give the child up for adoption (look on the families board, someone there was looking for advice on adopting a CFer, there are people willing to adopt kids who aren't perfect), or terminate the pregnancy. In the end, the choice is yours. I'm afraid that you aren't going to get the kind of support you are looking for in this forum, perhaps you should try a website like <a target=new class=ftalternatingbarlinklarge href="http://www.imnotsorry.net/whythis.htm">I'm Not Sorry</a> where there are stories about women who do not regret choosing abortion. There are a number of places on the web to go for support or other places such as <a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/userinfo.bml?user=abortionstories">Abortion Stories</a> on Livejournal (an account with Livejournal is required to use this forum).

I wish you much luck with your decision, whatever it may be.
 
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Emily65Roses

New member
Okay let's see. If you believe in god, I might have to agree with Jarod, maybe he/she wants you to have a child with CF, for whatever reason. He's supposed to have some sort of plan that we can't understand, right? Maybe a child with CF is part of that for you.

As for CF haunting you... let me make an observation. You and your husband are both carriers of the CF gene. Yes it's only a 25% chance of CF every time and so far you've gotten the short end of the stick both times... but it's not as if you're looking at 1 in 100 odds. 1 in 4 is not really terrific odds if you're looking for a healthy child. It's not *that* unreasonable that you've gotten a CF fetus both times.

If it's important for you to have another child and it's just as important to make sure it's not a CF child, then perhaps you should try another route. Adoption, for instance. I realize the easiest and most natural way is the way you're doing... but if you're going to abort every CF child that pops up, it's really maybe not the best way to go. You should be happy that you got to experience pregnancy and childbirth the once (with your 2 year old), and go another direction to get her a brother or sister, unless you're willing to take what you get. I'm not saying you're taking the easy way out with abortion. I've never been pregnant, I can never get pregnant, so I can only imagine what that must be like. But you've been lucky enough to get pregnant and experience all of that once... So if abortion makes you feel so miserable, why would keep rolling the dice like that and just hoping for the best? I would suggest either taking whatever you get in this pregnancy, or the next.... or going an entirely different route.
 
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anonymous

New member
All i can say is I know how you feel.

We have a child with CF, and we just received amnio results that tell us our next baby is negative. We would have terminated the pregnancy if it was positive, case closed. We love our child with CF more than anything in our live, but my wife and i agree that no human should knowingly be given this disease in this world, it is 100% avoidable.

Sometimes I sware is if i hear another person say "god gives you a challenge because he knows you can handle it" then i will blow up. God isnt making the decision, the parent is.

I hope you are able succeed with your next pregnancy.
 
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anonymous

New member
After my daughter was born and diagnosed with CF ( at birth ) my husband and i were terrified that we would have another child with CF but it really isn't the end of the world, our last child does not have CF. After her birth we did agree to have a tubal and not to have anymore children. I feel that it was the worst decision that i have ever made. I regret the fact that i can not have anymore children although i do feel very fortunante and blessed to have 3 beautiful children, 1 with CF and i would never trade her for anything. My other children love their sister so much and always pray and care for her when she is sick or hospitalized. If you are worried about how CF will affect your 2 year old child, it will only make her more compassionate and caring and the love that she will have for her sibling will be wonderful. My husband and i show no favortism to our daughter with Cf, we treat all of our children equally and we let our daughter with CF live her life as a normal child.
I am sad to hear that you did abort your baby and i will not pass judgement upon you ( we only have 1 judge and if you believe in the Lord than you know that he will forgive you ) I would really encourage you to have the next baby. Give the baby a chance and you will see how much you love this child. I believe that the Lord gives special children to special parents because he knows that we will care for and love these children.

I will keep you in my prayers

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

New member
yes CF is a terrible disease but no one is promised tomorrow and everyone deserves a chance to live thier life to the fullest no matter how long or how short of a life we live. i really like the quote . " i will die with CF not because of it" we will all die someday no matter what. If you had a child that had some other horrible disease would you ever wish that they were not born. we will all go through trials in this life and there is nothing anyone can do to stop them. being born with a disease or dieing in a car accident or being murdered are all things that are beyond our control and i think we just need to live and be happy. while in the hospital i have seen children that are in much worse pain and guess what their outlook on life is so great and they are happy to have lived.
 
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WinAce

New member
I don't see why you should continue trying to "chance" a healthy child. You wouldn't play Russian roulette with your kid, if there was only a 1-in-6 chance of killing or injuring them, would you? You already have a healthy daughter, take pride in her. If, at some point, you really want another child, I assume you've thought about adopting? You'll evade the CF conundrum completely, and give a kid who might otherwise be relegated to the dustbin a loving family.

My parents tried to "chance it" repeatedly. They left grave markers all over the world (1 in Russia, 1 in Italy and one here--two died in infancy, the last died at 6.) I'm the only one of their kids still living, and that could soon change. It drove them apart and eats at them to this day. Do you want to follow in their footsteps, should you feel to guilty to abort again and want to keep comitting the Gambler's Fallacy?

You may want to get professional help if you're just crying all the time. It can help you cope and survive these kinds of things.

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.
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br> I feel HAUNTED by this miserable disease...WHY won't it leave us alone. <hr></blockquote>

No offense, but why don't you leave IT alone?

At least, as Bill Bennett would say, you're keeping the CF crime rate down.

Q
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>WinAce</b></i><br>is just plain condescending.<hr></blockquote>

Not only that -- it gives poverty a bad rap.

Q
 
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anonymous

New member
To the original poster - If you feel as though you chose not to knowingly have a child with cf because you and your husband couldn't handle it and did not want to subject your daughter to this - you might want to consider other options as some of the other responses noted. My concern would be for all of the other possible diseases, physical disabilities, learning disabilities and emotional problems that a new child (without cf) might bring into your lives. Many of these are not known via genetic testing or any prenatal testing. It sounds as if you may only be willing to have a healthy baby. Maybe you should be happy with what you have. Even if you elect to adopt, there are no guarantees that they will not have a disease, disability or other illness. Best Wishes in these difficult times and with these very important decisions. Jo Ann
 
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anonymous

New member
WinAce-
If you don't mind me asking...
Why did your siblings die in infancy? I've been doing a lot of research on this subject in an attempt to find out why my son suffered the birth injuries that he did.
His bowel ruptured which caused him to stop breathing. That's what I've been told, but I'm not satisified with that answer and I'm trying to dig deeper.
Mostly, I feel this devastating injury to his brain could have been avoided. The doctors knew his bowel was dilating, and at my 37 week ultrasound it was dilated 2.6 cm, which is huge for a baby's intestines, and they chose to do nothing, remarking that it was no big deal if his bowel ruptured. I can't find any study's on this, it's like my son is the ONLY child this has ever happened to, therefore they had no idea it could happen.
Jen
 
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