If anyone will talk to me, I'd appreciate it (2nd termination 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
I personally think you are just plain selfish. How dare you come to a site for people who have loved ones with CF and complain about how bad you feel? How about the lives you are ENDING? I feel so sorry for your unborn children who are not even given a chance to live because you have decided to take their chance away. I hope you STOP getting pregnant after you kill this child...you don't even deserve to have children. AND I feel very sorry for your daughter and cannot imagine how she will feel about you once she realizes what you have done to her family. You should be ashamed of yourself and if you had one bit of sense or compassion you would have searched for an abortion board rather than a CF Family board. DUH.

I hope this is just a joke designed to cause a stir.
 
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anonymous

New member
I am so sorry that you feel as this is your only option. I do understand the devastation you feel- I think anyone who has heard the words your child has CF understands. My son is 20 and I will say even though it has not always been easy-for him, for his older brother or for us as parents- he has brought more joy than I could possibly tell you. I would not change having him for anything in the world. Treatments today offer so much hope!! Will has led a great life- school,sports,church youth group- he is currently working every day. In fact was just recently working two jobs. Yesterday- he enrolled in a new study-PTC124- that could fix one of his mutations- the researchers are very very excited!!! I would suggest some counseling- genetic as well as emotional counseling. One thing to think about- we are never guaranteed a child with no problems- I have a friend who until last year had a seemingly perfectly healthy child who was diagnosed with a brain tumor- she is just now finishing a year long battle. My point is we must deal with whatever we are handed- the only way to guarantee never having a child with any illness is not to have any.
 
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anonymous

New member
It's not a joke but you're a jerk or judging me and my family for our choice...we do have choices in this world.

I certainly am not trying to be insensitive to people with CF or with it in their families. If that is the case, then moderator, please take my message of the board.

I am a CF carrier and I was looking for support in THE hardest decision of my life.

As far as bad people go, just because either you or someone you love has a horrible disease, you still sound like a bad, mean person for being so nasty to me. You're not exempt from being an a-hole.
 
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anonymous

New member
YOU ARE NASTY!!! I haven't killed anyone!! My CFer is alive and WONDERFUL! It is my choice to judge you and you are the one who decided to come to this board and bare all - so if you expected all of us to be compassionate then DUH. I am not mean or nasty, but ending lives of the unborn is something I feel compassionate about - if you feel that makes me mean or nasty that is your problem, not mine.

I truly pity you.
 
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anonymous

New member
LOU, (the name I am giving the poster to make it easier to reply)

Yeah, you are going to have a hard time finding sympathy from this site. I understand that people make choices for terminating pregnancies for a variety of reasons, and while I disagree with the choice you made, it's your choice. Why don't you try spending a little money on in vitro (OK, maybe a LOT of money). It was one thing to terminate your first pregnancy and be caught by surprise, but it's a far different thing to KNOWINGLY conceive a child knowing your risks, and KNOWING you'd terminate if you got a result you didn't like. I suggest you try a different site to find words of comfort. But if you are having doubts about your choice (and it's not too late), then seriously look through these postings and reconsider. My son has brought me so much joy, strength, and admiration. You would never regret keeping your child. Again, YOUR CHOICE, but you should really consider taking a proactive position in bringing another child into this world (keep the baby, or get pregnant through in vitro, or adopt).

Good luck,
Jena
4 yr old son with cf
1 yr old daughter no cf
 
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IG

Guest
It's sad that people can be so rude about such a sensitive topic such as this.

I'm truly sorry that you are going through this and can understand the pain you feel. Nobody deserves to go through what you have to but countless do, the decision you make is yours, it's neither right nor wrong. You can only do what you feel you have to do and if that is to terminate the pregnancy I can only hope that it turns out better for you than last time. Though I do suggest that you find something more permenant for birth control if you don't wish to have any more children as you do obviously have a chance for CF. I'm sorry I can't offer advice and only say 'it's your decision' I can say I hope I'm never in your shoes and I truly hope it goes well for you whatever you decide.
 
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cosmokramer

New member
A child is always a blessing. The Lord would not give you anymore then what you can handle. My baby has CF, this is my first post, and I feel you need to look at the baby growing inside of you as a gift from God, CF or no CF. There are no guarantees in life. If I would have known before I conceived my child or even during my pregnancy that my beautiful daughter would have CF, it wouldn't have changed my mind about having her. My children are the most wonderful gifts I have been given.

A child with CF sounds scary but we are all handling it. One day at a time.
 
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anonymous

New member
Shamrock,
Looks like there are 11 of us browsing the boards right now. But I was wondering myself if this post was one of those fake ones planted just to cause controversy. You never know, which is why I try not to let myself get too emotional over anything anyone says. I've had trouble signing into this site, but usually sign my name. Wish people would give us some kind of name to respond to. That's why I named our poster Lou (no significance in the name). <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jena
 
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cfmom2rt

New member
All I can do for you is pray. I have this motto EVERYTHING happens for a reason, take life day by day nobody knows what tomorrow will bring. Be thankful for your miracle you have right now watching you. She is a precious gift enjot the time you have with her!!!!!
mom to a 3yr old miracle with CF
 
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anonymous

New member
I SO wish from the bottom of my heart, that I was a 'fake', but I'm not. I appreciate those that gave me their answers in kind words, even if our choices are different.

We did try invitro so that we could do PGD (believe me, I researched this BIG TIME). I did IVF 3 times and it never worked. I'm 35 and my Fertility doctor said that as eggs age, they don't like to be messed with. After 5 years of trying to conceive, we had my beautiful daughter and THAT'S when we found out about being CF carriers.

I feel that IVF/PGD wouldn't work, since natural (actually an IUI) was what produced my baby. But, we will look into this at some point, since I can't go through this again. I will also consider donor egg, sperm or adoption. So no, I'm not a fake, but I wish I was.

I just came to this site to deal (or try to deal) with my feelings of victimization for being 'dealt' the CF card. I mean the ODDS for my husband and I both having it are something like 1 in 600. I thought SOMEONE might tell me how you handle that feeling as though you are being 'singled out'. That's all I wanted.

But I'll go elsewhere.
 
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anonymous

New member
I could see how you'd feel victimized, for sure. It's a genetic crapshoot, and you were dealt the losing cards. I'm sorry IVF didn't work for you, as that was my suggestion as well. Even as a HUGE pro-choicer, the idea of abortion as birth control strikes me as a mite irresponsible.

But I wanted you to know someone understands your reasons. CF is something terribly difficult to deal with. I watched my husband die of it, and though I loved him fiercely, it's something I would never want to go through again. We adopted a daughter, who is the joy of my life. Perhaps you could look into that.

I think the reason you may have posted here is, for questions like this, there is little place to go. But here you'll find mostly people who are dealing with it in a different way, and even some who have chosen to give birth to more than one Cf-er. And while I may not support them in trying to have another child with that knowledge, I would say the same to you. You know you have this. If you would feel irresponsible ( as I would) giving a child a life lived on 'borrowed time', and you can't do IVF. Then adopt. Yes, being dealt with CF gene is unfair, but I think adoption would lead to much less heartbreak than you doing this again and again. Your chances of having a cf-er are apprixiametely 1 in 4. At your age, pregnancy is hard enough. Adoption would be a wonderful way to bring a new child into your life. Think about it.

Allie, 32
Ahava, 4 no c/f
 
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anonymous

New member
I dont agree with abortion either....I should clear that up I dont agree with it in alot of cases. Like some one just using abortion as birthcontrol. I think that sometimes it is justified when a mother is in danger/child. Yes this is a very senstive subject. I dont blame you for aborting. *SHOCK*...hate me all you want people i dont care. But it seems as if the ones being mean and rude are forgetting the realities of CF. Yes new medication and technology is doing great strides in helping cfers. Yes cfers are strong people who bring their loved ones joy and happiness. But what about the times when a cfer is sick. What about all the pain a cfer goes through...not just physical but emotional. All the needles, surgery...feeling like your drowning in your own body...chest pains, joint pains...Some of these things cant just be fixed by a medicaition and the pain and sickness only gets worse. just like there is no gaurantee that the unborn child would have a mild case and do well most of its life there is no gaurantee that the child wouldnt have it so severe...surgeries from day one and never know what its like to be a child anyway because its so sick and dieing before it reached its teens.
Whether you agree with this lady's discision or not, it was the hardest thing she ever had to do like she said. She has to live with it the rest of her life, not you. Its easy for us to judge someone when we have never been in that persons shoes, even if you are a parent of a cfer. As a parent of a cfer I would think you would have some sort of compassion because you have to watch your child suffer. You have to watch your child be sick and hurt and there is nothing you can do about it. I think these are both super hard to do.

To you original poster. Im sorry you have to go through this. Like I said I dont always agree with abortion. This one I am not sure about for my own opinion. But if it was right for you then it doesnt matter what my opinion is. I know for sure I dont agree with you getting pregnant again knowing you are cairiers and knowing this might happen again. Now its totatlly different if you got pregnant by accident, you werent trying. Although I would like you to keep this one, even though I know what the child might face, there are still no gaurentees things have to go a certain way. This is not my choice and my opinion doesnt matter, like I said before. Just keep that in mind though; there are no gaurentees in life, and there is always hope for the better.

Yes sometimes I do feel bad having cf. Sometimes it lasts a long time sometimes it doesnt last long at all because cf has made me the person I am today. I like me. I also feel as if I put my loved ones through alot of hurt when I get sick. They worry and I know they wish they could do somthing but they just cant. Yes as a CFer i feel like I got the raw end of the deal but I also dont think this often, just when I get in those depression slumps. But I wouldnt wish my brother got it instead of me, not in a million years. You may feel you got dealt bad cards as parents. I think many parents feel this way, especially because they feel helpless to do anything.

I hope you find the help you need. I do suggest you and your husband see a counselor to help you through whatever discion you make. From the sounds of it you need to anyway from the last termination because it was the toughest discsion for you and as a mother I would think you need to talk about it to a professonal. If you keep things bottled up or dont get the right help depression can haunt your life.
 
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anonymous

New member
Hi Allie,

Abortion is NOT my method of birth control. We just did NOT expect to have a 1 out of 4 chance hit us twice in a row. And after the birth of my 'carrier only' baby girl, I guess I never thought it would really happen at all.

I'm not defending myself or my choices, I just wanted to clear that up.
 
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anonymous

New member
To the original poster:

I can't believe you would terminate a pregnancy because of the CF. My son has been one of the biggest blessings of our lives and family. Sure we hate this disease and it really sucks, but you take the hand that God deals you and go with it. We had another child after my son with Cf and she has something completely different and it is also a struggle. She may live with us the rest of her life and not ever beable to communicate we don't know. We wonder why God picked us to have these two children with special needs, everyone tells us because he knew we could handle it. The fact of the matter is none of us know how long we will be here and I don't feel to terminate a pregancy for anything is an option. I don't think God approves of it as well. I am not a big religious person, but "this" is how I feel. I truly hope you decide not to terminate your second prenancy!!!!! You will find that it will be a blessing and you don't know what you would of done without that child. I just can't inagine life without my little guy that YES has CF!
 
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