If anyone will talk to me, I'd appreciate it (2nd termination mentioned inside)

[anonymous]

Thank you to the anonymous poster who shared with me so deeply. I appreciate it. I know I'm FILLED with self pity right now and very depressed. So, if anyone thinks this is a 'simple' decision, think again.

I don't want to feel like a victim forever and I am stuck there right now. I am seeking help, but this news is less than two days old. It's very fresh and that's why I thought I would share it with people who probably understand the feeling of dealing with this disease. Ok, I guess I thought lightning couldn't POSSIBLY strike twice TWICE IN A ROW. If that's selfish thinking, then I'll cop to it, but I never thought it really WOULD happen again, particularly not just a few months later. I'm not having fun here.

I so want a sibling for my little girl. That's all. If that's selfish, so be it. I'm doing the best I can.

But thank you again anonymous poster for your honesty...it gave me a more balanced look

 

[anonymous]

I think SOME of the issue is many of the people on this bpard ( the families board) don't have it, or have it watched somone they love suffer and die because of it. When children are young, they aren't at the tailend of this horrific thing. My husband and I chose not to have kids because we didn't even want our child to be a carrier because of us. We felt strongly about that. So when people try and tell you Cf is blessing...it's not. Sorry if that sounds harsh. I would never put a child through what my husband endured.

Allie, 32

Ahava ,4 no cf

 

[Emily65Roses]

"Ok, I guess I thought lightning couldn't POSSIBLY strike twice TWICE IN A ROW."

Problem with this is that the likelihood of lightning striking you is very very slim. If you and your husband are both carriers of the CF gene, then the likelihood of "lightning striking" in that situation is only 1 in 4. Much better chances.

 

[anonymous]

I just realized I wasnt signed in. For some reason I cant sign in. Anyway I was anonyomous Friday October 14, 2005 2:29 PM just to put a name with it.

Original poster I hope you get the help you need and can find the descsion thats right for you again. Whether it be the same or different.

Allie my husband and I have done the same thing. We choose not to have kids for several reasons, one being we dont want to risk passing on the gene or cf. I also didnt want to leave my children with out a mommy. I didnt want them to have to see me being sick, I didnt want them growing up with a mommy that couldnt go out and play with them. My healthy just wont allow me to be pregnant anyway. I mean I could get pregnant but my health would suffer severily. My health was the main point in our descsion. So I got my tubes tied to be extra safe. My husband would have gotten a vascetomy but insurance wouldnt cover it, plus what if I pass away and he remarries and his new wife wants kids.

Sorry I got way off topic.
Original poster again. I am sorry you came here to seek others who feel the same as you and you didnt find them. But know that I am praying for you anyway.

Amanda aka Purplelungs

 

[anonymous]

I just wanted to share my story, the short version. I hope it helps you.

I found out I was a carrier when I was pregnant with my 3 year old daughter. I knew my husband was a carrier because he has a child from a previous marriage with CF. We were so fortunate that our little girl didn't get both genes, she only got my husbands. We decided we would not have any more children because of the odds, but then on the day after Christmas last year I found out I was pregnant. We were shocked. I had been on BC since my daughter was born, but I had been taking antibiotics for a cold and my doctor said it may have interfered with my BC.
I waited until I was 16 weeks pregnant and I had the amnio which revealed my son had both genes. I cried for days, then I finally came to terms with it. Fortunately, we knew a lot about CF because my step-son (11) has it, and he does really well, and I couldn't imagine not having him around. But I remember in the weeks after the amnio, while waiting for the results, I contemplated on what Iwould do if the baby was diagnosed with this disease. I couldn't even imagine how parents could deal with it. Then tragedy struck...when I was 39 weeks pregnant my son's bowel ruptured and he went into distress. I noticed he wasn't moving and went to the hospital. It was four hours before my son was delivered via emergency c-section. He wasn't breathing and was completely limp. My husband and I just cried and felt helpless.
It's been six weeks since he was born, he has been diagnosed with a severe brain injury due to lack of oxygen (cerebral palsy), and according to the neurologist he will never walk, talk or see, will mostly have siezures, and profound mental retardation.
Now, when I look back to the day when I got the amnio results I think of how nieve I was. I had a perfect little boy, with personality, emotions, and the ability to love and bring happiness to others. I feel so stupid for not realizing how much I had and now its gone.
I don't think your a bad person, I understand your feelings, but I think you should look at this from a different perspective.
Jen

 

[anonymous]

One thing I tried to bring out in my first post- I was number 3- was that we arent guaranteed anything. Say you adopt a child or do IVF- what does that guarantee you except that you wont have a child with CF? What about other illnesses, accidents? Of course I dont live my life expecting the worst- just the opposite. But you have to be realistic. If you dont want to take the chance of course there is only one answer- dont have children. By the way my name is Susan-I will try to register. I have two sons- Wade 26 without CF- Will 20 with CF.

 

[Seana30]

Dear Lou (I believe that is what we are calling you)Please do not let some of these posts run you away.  One thing that I have learned with CF boards is people feel very strong about their own beliefs, and have NO problem telling you how wrong you are.  You just need to skip over the rude remarks and find the people that are willing to share their wisdom (agree with you or not) in a polite manner.I am a HUGE pro choice advocate.  I am a true believer that a woman has the right to chose if she wants to continue a pregnancy.  When I had my daughter 13 years ago there was no CF testing during pregnancy, so I can't say that I understand what you are going thru.  I do know that if you need support you can e-mail me, and I will try to help in whatever way I can.Now, I am probably going to start sh** here but I have to make a comment.  When I posted my feelings about what it was like to be told your child has CF I was BASHED with comments from CFers saying that I will never understand what it is like to have CF and was pretty much told to go away and post on the "family" side because they didn't care about what the relatives of CFers felt.  Well, the roles are reversed here.........how can you tell this person how and what they should feel when you have no idea what it is like to be told your child has CF.  This person is crying out for some type of help and all you can do is take your own feelings in to consideration.  SHAME ON YOU!Lou, you hang in there.......you make whatever choice is right for you and surround yourself with people that care for you and support you.Seana

 

[anonymous]

Thank you for the last few comments...I appreciate them.

Seana, yes, I would very much like to email you...but your email address is not there. Can you post for me (I'm a little scared to post mine right now but if you want, I will).

Thank you.

 

[Seana30]

my e-mail address isjlofton@elp.rr.comSeana

 

[anonymous]

I do not understand how you can come to this board that is full of people with CF or with parents of children with CF and say that you feel victimized. I really do think that it is very selfish for you to say that. I guess it is one thing to maybe feel that way but to say it to people that have the disease is another. I most certainly hope that my daughter never ever ever feels like she has been such a burden to me, she has been nothing but a BLESSING and if given the chance i would have her all over again. with or without CF !!!!!

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

 

[anonymous]

To the OP, using donor sperm or donor eggs will not be a guarantee that your child will not have cf. Genetic screening for CF is just that, a screening. They check for the most common mutations, NOT rare mutations so it is quite possible that your child could still end up with cf since you will not be using both donor eggs and donor sperm. For that matter, even if you used a donor egg and a donor sperm, there is still a chance that the child could end up with cf. I agree with the poster who suggested adoption as a choice. I would suggest though that you request the child be sweat tested and genetically tested using ambry or quest diagnostics in order to rule out the possibility that the adopted child does not have cf. Or, adopt from China, or another country where cf is extremely rare (vs 1 out of 2500 births in the US with 1/25 caucasians carrying the gene.)

I'm honestly not trying to be negative, just trying to make sure you're informed before making another decision that could end up in another termination and more pain for your family. While I do not necessarily agree with your choices, they are your choices to make, and I understand the pain that you are dealing with. Good luck in your decision(s)!!

 

[lovingBenandCambree]

I just really felt that i needed to say something on this topic. I am in no way for abortion. I do not feel it is right to end the life of a child but I am not in your situation and it is absolutely your choice. HOwever I would like to share a little something. My parents, now divorced had 3 children together myself and my two older brothers. My oldest brother does not have CF, the next does and I do. When my mother got pregnant with me someone told her that it was very selfish of her to get pregnant again knowing that she was playing "russian roulette" that I could have a chance of having CF. I have to say that I am so grateful for my mother for making that decision to have me and give me a chance at life. Has life always been easy, no! Is it easy for anyone with or without CF? No it is not and anyone that says it is hasn't lived very long. Some of the hardest things I have gone through have nothing to do with my CF. I have lived a very healthy normal life. I am now married and have a beautiful daughter that I am so proud of. She is a carrier of course but does not have CF herself. Had she had it I still would have loved her and been absolutely devoted for her. I don't know that I can change your mind in what you are doing but I guarantee that if you do keep this baby you will have so much joy and love. As others have stated life is a challenge and we cannot guarantee anything. This child may have Cf but another child may have something different. There is no such thing as a perfect child and although your daughter may be healthy now you never know what life may bring her way. We just deal with what we get and hopefully do it in a graceful way. Good luck with your decsion. I truly wish you the best. I know that this can't be easy for you whichever route you take. If you want to talk at all about what it is like to have CF I would be more than happy to.


Emilee

 

[anonymous]

Dear original poster,
I had an abortion 16 years ago and I want you to know that for the last 15 years, not one day, not one, has gone by that I did not regret it. I know others that feel the exact same way. I was completely pro choice until one day, a year afterward it just hit me, what I did. It might take a little while for you but there will come a day and it will be the worst day of your life. I feel for you, I really do, I know where you're coming from but I also know what's ahead for you. You have a child, look at her and imagine not having her, that baby inside of you will look so much like her, let your child live, you will never regret that, but choose to not let her live?...you will carry that choice with you the rest of your life. I can't think of a more horrible feeling. You will already regret the one, but choosing to not let yet another live, you will be haunted by that decision. You are no longer just one person, you are two, you are carrying another person and making that choice for them. The daughter you have now could easily be diagnosed with cancer tomorrow or hit by a car next week, there are no guarantees. Ending their lives because they have CF or any reason is ignorant. You have no control over what will become of your child's health/life. It is ignorant to think you do and you will regret these decisions to terminate.

 

[anonymous]

I have something for you to think about.... Would you consider carring your baby to term then have them be adopted? If you "couldn't let him/her go", then how can you end their life? There are people who would love to adopt a child c/f or not. I am in the process of adopting a 2yr old with c/f. I really would like to know. Please think before you leap.

Fostermom

 

[anonymous]

To the poster above Fostermom,

You are a mean and ignorant person. I'm NOT HAVING A DISCUSSION ABOUT WHETHER ABORTION IS RIGHT OR WRONG. I came here because I thought this board supported those effected by CF, and as a carrier and the mother of a carrier and pregnant with an effected baby...I AM EFFECTED. I'm sorry you feel so bad about the abortion you had. Go deal with that.

And God help you for the evil things you said about my daughter (God forbid, getting another disease). You obviously don't have children. If you did, you MIGHT understand that any parent DREADS the thought of a healthy child getting sick EVERY SINGLE DAY. That's what parents go through with healthy children. I don't want to compound it by having a child that already starts out that way.

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.

 

[Allie]

I agree wholeheartedly with what you said. Even if someone disagrees with you, there is absoultely no reason to be intentionally cruel about things. NONE.

I hope you know not all of us judge you for what you're going through. Some of us have seen how horrific Cf can be, and understand your conflict.

I hope whatever you decide, you end up happy

 

[Emily65Roses]

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.

 

[ReneeP]

Wow... busy day here, hugh? Both forums at that...

First I just want to say I'm sorry for what you are going through. I know it isn't an easy time for you but it is something many, if not all of us have experienced in one way or another.

I wanted to make a comment about this whole "your other child could get cancer or have a car accident" thing. I see that it upset you very badly. I think it's pretty obvious that the poster was not "wishing" those things on your daughter. She was simply making a point...and it is a valid point. Things happen and no matter how many children you have, or don't have for that matter, there are no certainties in this life. When my first daughter was diagnosed I was devistated. I felt that my life was over. Finally someone said to me "Kaitlyn could die in a car accident tomorrow and look how much time you would have wasted being miserable instead of enjoying the time you have with her"... that got me thinking and that's really what pulled me out of my misery. It's a fact of life. We do not know, nor do we control, what will happen.

I don't think this issue has much to do with being pro-life or pro-choice... If you were having an abortion because you were raped or even because you were young and just weren't ready I think you'd be more likely to get support here. You are coming to people who are dealing with CF on a daily basis...people who love people with CF and can't imagine their lives without them...and you are asking us to feel sorry for you for aborting two children because they were just like our children...You are saying our children aren't good enough to be given a chance at life... And if I didn't misunderstand you on your last quote you used the words "But that's WHY I tested in the first place...to avoid needlessly torturing a child"...So you are also saying that we are "needlessly torturing our children"... Can you see why some people may not be so sympathetic to that?

I didn't know my first daughter (Kaitlyn) had CF until she was 2 1/2. I found out during my pregnancy that my second daughter (Kacie) had CF. I could not look at Kaitlyn and say that I regret having her... And I could imagine trying to explain to Kailtyn that I killed her sister because she had the same disease Kaitlyn had... That just didn't seem right to me.

What you choose to do is entirely up to you. I will not question or judge any decision you make, that being said, however, I do believe that you are trying to have a child for the wrong reasons... I personally think that when you make a decision to have a child, you take the child you are given regardless... It's one thing to abort a pregnancy that was accidental...it's an entirely different matter to deliberately get pregnant and then abort. And I know Emily already said this, but 1 in 4 are very good odds... You could easily have this happen over and over... If you want to pick out your own child, you probably should consider adoption. That way you can get what you want. You don't have that option with pregnancy....

I wish you and your family only the best.

 

[anonymous]

What if you keep terminating because of CF, and end up having a child with some other genetic disease or a birth defect that wasn't detected? Are you going to give it up for adoption? Or is CF the only ailment you are worried about? There are lots of diseases out there that are as bad or worse than CF.

 

[anonymous]

Very well said, Renee. Thank you.