Shocked

[thelizardqueen]

I would definitly have a child knowing that it had CF. But I think us CFers are maybe different when it comes to stuff like that? Maybe because we've been through so much and we know the value of small things? I dunno. I do know I would have it, because regardless of what it has, I would love it no matter what because it is mine. I created it. Conditions are secondary to me.

 

[ReneeP]

I just wanted to say I'm sorry for the terrible time you are having. What should be the most exciting time of your life probably just became the most scary. Having been there, I can somewhat understand what you are feeling (though I realize every situation is different).

My thoughts on amnio... I know many people feel that the only reason for an amnio is if you plan to abort the baby. I very strongly disagree with that. I didn't know my first daughter had CF until she was 2 1/2 (no family history...I didn't even know what CF was until I started reading medical books trying to figure out what was wrong with her). Then shortly after her diagnosis, I found out I was pregnant again. I decided right away that I would have an amnio. The thought of aborting never so much as entered my mind. For me it was to be emotionally and physically prepared for what was coming. I knew already that having a baby was a very emotional experience. The hormone levels going up and down and the stress on your body and mind can be overwhelming. I didn't want to double that by having a new baby and a new CF diagnosis at the same time. If the diagnosis was going to happen, I wanted it ahead of time so I could have a few months to accept it and make peace with myself. That way I could focus on enjoying the new baby when she arrived rather than focusing on the CF. For me it was well worth it. I found out at 17 weeks that she did in fact have CF. It was hard...no doubt about it. Even harder than the first diagnosis in some ways. However, I had 5 months left to deal with it and by the time she was born, I was prepared. I didn't focus on the CF, only on her.

There are other benefits to knowing ahead of time, such as being aware to look for bowel problems via ultrasound, being prepared to deliver at a hospital which can care for the baby should the need arise, etc. I'm not saying everyone should have an amnio...it is very unpleasant and for me was quite painful, but I would certainly do it again. I just wanted to say there are some benefits of an amnio other than the option to abort. It is most definately a personal decision and I wish you the very best whatever you decide.

 

[Scarlett81]

Good point, Renee.
Just by the way, when I mentioned the negatives on amnio-I didn't mean to imply that a mother would only do it in case of abortion- I just feel that there's been alot of research that shows amnios are high risk to mother and baby.

I didn't see if it was mentioned previously or not, but two people I thought of you can talk to are Julie-who knows everything about conception, genetics, ect.. and www.geocities.com/murrensnaturemama.com- website that has alot of statistics and pregnancy/baby/cf related facts. It might help you.

 

[Ratatosk]

We didn't decide to have kids until I was in my mid-30s, so the doctor asked me if I wanted to have the triple screen test -- because of the large percentage for false results showing neural tube defects and downs. I'm such a worrier that I went ahead with that test, but had pretty much decided that I wouldn't have amnio and just deal with whatever life gave us.

Little did we know until 12 hours after ds was born that he had a bowel obstruction caused by meconium illeus. Fortunately a neonatologist picked up on it and arranged to have DS lifeflighted to the City to a hospital with not only a high level NICU, but an accreditted cf center. He went thru 4 hours of surgery to repair the damage, untangle his intestines, remove some necrotized tissue. Were THRILLED when he pooped by himself 3-4 days after.

Looking back it would have been nice to have known ahead of time that he had CF -- if the doctor in the local NICU hadn't realized there was a problem, things could've gone very very badly. When DS was born he was examined by a different neonatologist because of concerns with the color of my amniotic fluid -- they though he'd stooled in the womb and suctioned out a ton of green goo. He had xrays at that time. Next day he was examined again by a pediatrician, who commented to me that DS appeared to have a LOT of stool in his belly -- that his belly was distended. But again -- no concerns, nothing was done. I wasn't given any reason to be concerned. Then DS started hurling green stuff and by then there was a differernt neonatologist -- the one who figured out everything.

So my only suggestion is to make sure that they are monitoring your unborn children closely to make sure that there aren't any bowel problems and so they can get the best care possible when they're born.

Liza

 

[anonymous]

Thank you all for your advice.

I appreciate all of the feedback I have recieved and hope that it continues. We need alot of encouragment and thoughs and prayers right now because it is such a very scary time for us.

We are trying to be positive about things and are hoping for the best outcome. Thanks to everyone who takes the time to write commets because this really helps. Please continue to keep us in your thoughts and prayers.

 

[anonymous]

My husband and I found out during our 3rd pregnancy that we are both carriers. Our son was showing an echogenic bowel on ultrasound and they sent us to be tested. They gave us the option of an amnio but we declined. Sure, it would have been nice to know but we did not want to take any risk. It would not have changed anything. Even though we wouldn't admit it to each other we both knew in our hearts that he had CF. I was cared for by a perinatologist who monitored the baby very often and closely. We were scheduled to deliver at the best hospital in the state just in case. We had months to research and kind of came to terms with it before he was born. We were still hoping that he would be fine but at 2 days his diagnosis came back. Yes, it was difficult but if that diagnosis came out of nowhere with no advance warning, I think it would have been much harder. I stressed out about it so much during my pregnancy and missed out on enjoying it. All my worrying didn't change anything. I know its hard not to worry though. Please take the time to enjoy your pregnancy!

 

[3timesthefun]

I know this is a very hard time for you. I was in a very similar situation 8 years ago. I opted not to do the amnio, I new I wouldn't do anything to change things if they came back positive. I also was hospitalized with preterm labor when we found out we were carriers, and an amnio would have increased my chances of delivering them too early. If finding out will give you peace of mind, then do it. Having multiples is already a high risk pregnancy, if you are not taking care of yourself it will only make matters worse. Having triplets, or multiples is a huge job, and add Cf to that mix makes it an even bigger job. But I wouldn't change my life for anything. If my kids didn't have Cf, they wouldn't be who they are today. It has made us all stronger. Good luck with your decision, you are in my thoughts and prayers.

 

[izemmom]

I don't have any insight to offer on wheter to test or not. That is your descision, alone. I do know this. Raising a child with cf is hard. It's heartbreaking. At times, its exhausting. Raising two would be doubly hard, heartbreaking and exhausting. BUT... you will rise to the occasion and do whatever you need to do for those children. Just as you would a child or children without cf. The ostacles are not insurmountable. You will ask questions and learn what you need to know. You have already found a great source of support. You will love your children and that love will lead you to do the "right" thing. You can do it, with or without cf.

 

[thelizardqueen]

Well put Tami.<img src="i/expressions/face-icon-small-smile.gif" border="0">