cf pregnancy

[anonymous]

just wondering what peoples views are on finding out you are pregnant and the baby could have cf
what do you think should be done..........is it right to keep a baby knowing it could have cf should it be tested?
im 5 weeks pregnant just now and my head is all over the place....i have 2 daughters 1 with cf 1 without

 

[CFHockeyMom]

This is a very personal choice and I'm sure you'll get opinions from all sides.

Being that you already have a CFer, I'd at least get the test done to determine if the baby has it. If nothing else, you can prepare. As far as keeping the baby, there are arguments on both sides but in the end it comes down to what you can live with. Can you live with aborting the fetus? Can you live with another CFer? It's a big commitment emotionally, financially, and physically as you know. Talk about it with the baby's father and see where he stands. I know my husband has already told me he couldn't go through it again.

Good luck.

 

[anonymous]

My first pregnancy was a stillbirth at 35 weeks, due to CF. Then I had a miscarriage, due to CF. Then I had boy, who is not even a carrier. Then I had a girl who has CF, then I had another miscarriage and I have another boy who is a carrier. I then got my tubes tied. While I was pregnant with my second son, I decided not to find out ahead of time if he would have CF or not. We wanted to have him tested after he was born. Life is precious. I am thankful for all my pregnancies. I just would hate to purposefully end a pregnancy, and then the next day a cure for CF is made. Even though my daughter has CF, and it is a sad diesease, I just couldn't imagine my life without her.
Good Luck

 

[anonymous]

For the pp; You said you had a stillbirth at 35 weeks because of CF, my questions is what exact cause did they give you?

And to the original poster,
I know how it feels to be in your shoes. I'm 29 weeks pregnant and I can vividly remember worrying to death constantly. I found out on 4/18 that my baby does have CF and although the diagnosis was the worst news I've ever received in my life I have found that you do move on and get past the initial devastation. For me the test was a must, I could not continue on for all these months worrying myself to death, and I did not want to get the terrible news on the day my baby was born, I wanted to be past that point in life. I wanted time to accept this and come to terms with it. And I have done just that.
But, try to remain optamistic the odds are better that your baby will be fine. You will make the best decision for you.
Jen

 

[anonymous]

I am actually very curious about how the stillbirth situation occured at 35 weeks, also. It was because CF, was it that you (the mother) has CF or was it because the baby had CF? I am very sorry to hear about your loss.

 

[anonymous]

I think it is also important to consider the ramifications of having two children under the same roof with CF. CFers can give eachother bugs, and make eachother sick, so it is something to consider.

 

[anonymous]

hi i am the first post......just wondering if anyone actualy has 2 cf children...........the last post has just got me worried about cross infection now.
i never realy thought that would be a big issue ..........can anyone help who is actualy in that position please

 

[anonymous]

My 11 year old step-son has CF and I have spoken with his doctor about what we should do after the baby is born. My step-son has psudomonia (sp?) and I was really concerned about him passing it to the baby while he is so little. The doctor said I shouldn't worry about it, he said as long as he doesn't get in the baby's face and we make sure everyone washes there hands chances are everything will be fine. He was very optamistic about it and assured us he will be fine. He said some children with CF are more prone to picking up this bacteria and he said there is not much you can do to stop it, even if there is not another CFer around. We know there is a chance the baby could pick this bacteria up from him but were going to do the best we can to avoid it. I mean realistically, what else can you do?
Jen

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>hi i am the first post......just wondering if anyone actualy has 2 cf children...........the last post has just got me worried about cross infection now.

i never realy thought that would be a big issue ..........can anyone help who is actualy in that position please<hr></blockquote>

There are lots of opinions on whether 2 kids in the same house (or school) will affect eachother. here's a thread where several moms with 2 cf kids have posted (if you can weed through the criticism of the original poster).

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=2915&FTVAR_MSGDBTABLE=">2 kids in same school</a>

My wife who is a carrier is 12 weeks pregnant (through artificial insemination). We decided not to test for cf b/c we wouldn't terminate this late in the pregnancy anyway. I'd love to know for sure just for mental prep but to us, it's not worth the risk of CVS or amnio.

Jason 30 w/cf

 

[anonymous]

my brother and i both have CF and we aren't really sick at all. we share all the same bugs, but all of the bugs we have are the same ones most CFers have, such as a. psuedomonis and we may have b. cepacia, i'm not really sure about that one. but it's actually good for me, b/c since he's there i have someone to relate to and we know how each other feels. that's just my personal opion.

Sara 18 w/CF

 

[HollyCatheryn]

I grew up with several sets of siblings and know several adults who have siblings with CF. They never had complications of cross-infection. I grew up spending the night with friends who had CF and being around them in the hospital and all sorts of situations and we never had an incident of cross-infection. I'm sure it happens, but I don't know where the big concern came from. There is a mom I know who was diagnosed after her son tested pos. for CF. They have had no cross-infection issues (before or after diagnosis).We did not have my husband tested for CF genes before we got pregnant nor did we have our daughter tested in utero. We chose to have her tested at her 48 hr check up. They drew blood for the gene screen along with all the other tests they usually run. It took about 6 weeks to get the results, but we were sure she didn't have CF by then because she was so pink and gaining weight well and her poops were normal and she was so happy and content. We didn't test ahead of time because we knew of the risks of CVS and amniocentesis. Even the few standard tests we did have performed during pregnancy (AFP, ultrasound, glucose tolerance) were inaccurate and diagnosed problems that were not present. We would have gone through with the pregnancy anyway and there's nothing to be done about CF before birth. Though I have learned that it would be beneficial to be able to start enzyme supplementation as early as possible. If you plan breastfeed, then that would not change because of the baby's diagnosis. But if you were planning to bottle feed, you might want to have the diagnosis so you know you need to prepare to nurse.There is one adult with CF who posted to a similar thread on the Families side a while back about being the youngest of 9 or 10 siblings and the only one with CF. I'm not sure why a baby with CF would spontaneously abort BECAUSE of the CF. I've never heard of that before. Perhaps I am misunderstanding the statements. I think it is interesting to note that NO ONE thinks they can handle many of the things that happen in their life, but somehow, when it happens the strength to push through is there. Just think, you have the advantage of already knowing how to care for a baby with CF. That same mom and son I mentioned above, have the advantage of being able to synchronize their health regimines. The daily care of two people with CF has not hindered them. I personally, speaking as a person with CF, think that my life is worth it. I'm very glad to live every day. I know that there were times that were hard for my family because of CF, but we might have had other hardships if not for CF. I think each individual's life is worth living even if it is tough. Check out Norma Kennedy Plourde's webpage on some of the remarkable things people with CF are and have been doing (<A class=ftalternatingbarlinklarge href="http://http://www3.nbnet.nb.ca/normap/remarkablecfpeople.htm" target=blank>www3.nbnet.nb.ca/normap/remarkablecfpeople.htm</A>)Try to evaluate: Would you rather not have your child who has CF than have to deal with his/her illness. Of course, the preference would be to have that child without illness, but that's not a choice you get to make. If you find out that your unborn child has CF, you can't just do away with him/her and remake him again CF free. If you got pregnant again, that child would be a different person. Is it worth never knowing and loving and holding this child because they may have CF? What would it communicate to your child with CF if you chose not to have a sibling because of a pos.diagnosis? Would he/she feel like a burden or of less value than a healthy child?

 

[anonymous]

I'm sorry but I take great offense to HollyCatherine's post. We DID choose to terminate a pregnancy with a CF child. Our daughter, thankfully, is 'only' a carrier, but we didn't feel willing or able to cope with the strong possibility of a very sick child. We certainly can't choose that the child who we 'released back to God' be healthy and we can't guarantee that our future children won't be conceived with CF, but today, in the U.S., we can choose not to continue the pregnancy. We certainly don't have, or expect, to have a life that doesn't have it's share of misfortune, but in this instance, after weeks of heart rendering grief, we choose not to 'sign up' for this particular one.

Don't think that my heart doesn't break everytime I think of it. I am incredibly grateful that science has come far enough to allow us to have a choice and I would hope, pray and do all I can so that science may one day cure this disease as well.

But for now, we, and everyone else out there, has a few choices left and I don't think it's fair to judge them. You wouldn't have wanted to make that decision, we did.

Respectfully,
T.D.

 

[anonymous]

T.D. I don't know where you get from HollyCatheryn's post that she is being judgemental of anybody who makes the choice to terminate a pregnancy. She shared her personal opinion and what they choose to do-which worked for them. And you did the same and shared what worked your you and your family. Those are they types of things that make the world go around. It seems that you have some regrets maybe?

For instance, my husband has CF and my ambry genetic testing has come back that I am NOT a carrier-2 times. But, nothing is perfect and when we do our IVF with ICSI, I may do in utero testing. If we do find out that by some rare chance they missed a mutation and the baby I am carrying does in fact have CF, I am not sure what I would do. Honestly I have thought about it and part of me says that a child is a beautiful thing regardless, but then I have seen my husband struggle with aspects of CF and although he leads a productive life, I would not, nor would he, wish CF on anyone. So, maybe I would terminate the pregnancy. Either way, I would NEVER judge another person if they did terminate a pregnancy and I would NEVER judge someone for keeping a CF pregnancy.

This is a very controversial topic and everyone is going to feel differently about what would be the "right" thing to do. Ultimately, I believe the "right" choice is whatever works for the couple involved.

It's ok if you need to vent and be emotional about it, but I don't see that her post meant to be offensive to anybody. She has actually been a very active part of this board and provided a lot of useful information to couples about pregnancy with CF. I don't believe I've ever seen a contribution of yours on this site.

Julie (wife to mark 24 w/CF)

 

[anonymous]

I am the older brother of 2 brothers with CF. I take great offence to that last posting by TD. I find it very hard to read things about people terminating pregnancy because the child will have CF. If this was the case I would not have either one of my brothers. Yes, they dont live the same life as you and I do, but that doesnt mean that it is any less of a life. The big problem is people being selfish. In the last posting not once was their mention of the worry about what the child would go through when it was born with CF. It is all about what they would go through because of that child having CF. Just as you dont think it is fair to judge you for your choice. I do think it is fair for you to have made that choice for the baby. You are playing God by choosing to conceive a baby that you know you will kill if you find out it will be born with CF.

 

[miesl]

I'll think I'll get in on this "Taking offense" bandwagon at this point...

Don't judge someone until you've walked in their shoes.

Also... Please take note and remember that not everyone thinks abortion is "Playing God" - in my case... atheist. From my point of view - one can't play god when there isn't one (also note at this point, I have no problem with religion - if it makes you happy and your life more fulfilling - I'm all for that). Of all the arguements against abortion, that one makes me tune out completely.

Abortion is the choice of the parents (more directly, the woman who is pregnant). It's not your place to judge. They came here and gave the OP their life story, you don't have to get all in their face about it.

 

[anonymous]

Thank you Miesl...with the exception of your post, I'm almost sorry that I posted at all, other than the fact that it's cathartic for me.

Julie, I like your posts generally, but when you noted that I must have some regret, I was shocked. Of COURSE, we have regret, huge, overwhelming regret. Regret that I carry this gene, that my husband does and that we passed it along to a baby, Regret that we had to make such a stinking awful decision. But at the end of the day, as HORRIBLE, AWFUL (I can't even begin to express it correctly in words) that our decision was, we believed it was better for us, our two year old and most IMPORTANTLY our unborn baby, than risking a life of suffering. Could this child have ended up with a mild case of CF? Sure. But, I have been lurking on these boards for awhile and decided that I didn't want to 'play chicken' with a disease that can be so devastating.

To the older brother of two CF'ers, I can't imagine that you think I didn't think of the child. That was the main part of our decision. To choose suffering for myself is one thing, but not for another innocent being. I am a spirtual and religious person and I don't think abortion is playing God. It's trying to make the least harmful decision possible concerning the welfare of someone who you will bring into the world.

Lastly, had we not had testing and just had our baby with CF, we would have loved him dearly (yes, it was a him...any of you who criticize me, just IMAGINE how awful it was knowing that he was a little boy with otherwise healthy chromosomes). We would have been heartbroken for bringing him pain (I am heartbroken that my sweet daughter is a carrier), heartbroken that our daughter might one day bury her brother and wildly guilty (even though I rationally KNOW it's not my fault) for passing along the disease. I believe that God did work a miracle for US, in giving us the information that we needed to make a decision.

And please, when I say these harsh things about the disease of CF, I in NO WAY am speaking of its sufferers. Just in this short time, I have seen such beautiful souls that are SO unfairly burdened with a completely unfair illness. I applaud all of your successes, pray with you for a cure and bring you my story humbly.

 

[anonymous]

Don't be sorry that you posted what you did, we all learn and grow from a difference of opinion. I do not know what it is like to have to make that decision, therefore I can only commendt on what I might do but at this point it is just hypothetical. I might change my mind if I were ever in the position. And I probably should clairify what I meant by regrets, because I wasn't meaning to offend or shock you. I can understand that nothing will ever make the decision go away, and it is a very difficult thing you decided to do. I applaud you for doing what is/was best for your family and can see that you have great strength to do what you did, when you ovbiously wanted a baby because you tried for another (do I have that correct or did the carrier child come first?). Although the "dealing" with the issue that you had to go through will never go away, what I meant was that it appears (to me at least) that it may be beneficial for you to do some counseling, or journal, talk to somebody or a group about it... I don't know you and you may already be doing some of these things. But in reading your post (to me), it seems that you were still (and I don't know how long ago this happened so It may have been very recent for all I know) having a very hard time with what you did. But again, I really want to stress to you that my personal opinion is that everyone's situation is different and you have to do what is right for you/your family. And you seem to have done that-regardless of how hard it was. I hope that makes sense.


Julie (wife to Mark 24 w/CF)

 

[JazzysMom]

In my experience, my life with CF has been harder on my Mom. Even tho I am the one enduring the physical part, I still am stronger than she is emotionally. I believe much of her problem is "Guilt". At the time of my diagnosis, there was no testing beforehand nor did CF even exist (knowingly) in my family to be looking out for. Every parent must make that decision. I also dont take offense to the idea of terminating a pregnancy if determined that the child has CF. If my Mom had done it, no I wouldnt be here, but I am so..........Terminating a pregnancy in general is a controversy that will always be a heated topic so look at whats best for your family (emotionally, financially, spiritually etc) & just be aware that no matter what decision is made, there will always be someone telling you that it was the wrong choice.

 

[anonymous]

Thank you both. The 'decision'/action is a month old and it still hurts so badly. We found out we were carriers prior to my first child's birth and tested the CVS with her. THANK GOD she was ok. We also weren't sure if my husband' mutation (it had never been seen before at the time of her birth 2 years ago) was indeed CF. When we tested our second child and found that he had both genes, we did more research. Apparently, in the past two years there were two more reports of my husband's gene (both paired with Delta 508). One was a 27 year old woman with bronchiectisis (sp.?) and coughing up blood. The other was an 11 year old boy with chronic pancreatitis (sp.?) and asthma. Both had borderline sweat tests, but our doctors said it looked like CF.

My regrets are all focused around the 'What ifs'. What if the baby had JUST gotten my gene or my husband's gene or whatever. I replay the phone call where my husband told me over and over and imagine he's telling me 'It's all o.k!' instead. I keep thinking what if the doctors were wrong and that my husband's gene isn't really a big deal...These are my regrets and yes I have a ton of them.

I have been following this board since we first got the diagnosis...I just wanted to post to let the original poster know that there are choices, even though they suck.

 

[anonymous]

do u think it would have been easier for u ending the pregnancy earlier?
if u dont mind me askin i am the first post