cf pregnancy

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anonymous

New member
One thing I did not realize in your posting is that the decision you had to make, was so recent. NOt that it makes it any less painful, but that pain and heartache is so new to you still. Again, I applaud you for doing what was best for you and your family. Some may agree, some may disagree-I am honestly not sure what I would do if I ever faced the situation, and I very well may have to someday. All I know is that it is a very personal decision and just because you had to make the choice, doesn't mean you don't (or didn't) love your children-even the ones who aren't here any more. I encourage you to keep talking about it because that is what is going to get you through. You seem like a very strong woman and brave to share your story and I really did not mean to shock or offend you.

One question I do have, are you and your husband considering any more children? and if so, are you looking into PGD? If you need information, there is some on my website (www.cysticfibrosismaleinfertility.com). If you would prefer to email me, you can do that as well at cystic_fibrosis_male_infertility@yahoo.com. If you do ending up ever doing PGD, I am looking for more stories (from CFers, or those who carry the CF mutation and use artifical means of becoming pregnant) to put on the "success stories" portion. I realize this may not even be something you are thinking of yet, but if you need a place to start, I have some PGD (IVG/ICSI) info on my site and some links to where you can do some more research.

Stay strong,

Julie (wife to Mark 24 w/CF)
 
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2sickkids

Guest
I have a 2yr old and 10 mo both have cf. They don't always get sick at the same time. They don't play with each others toys yet and I wash all toys when ever they aren't playing with them at night. We had been trying to have another baby. I had been taking hormones and days before my oldest tested positive I had surgery to help me have a baby. I stopped taking the hormones and and started using condoms. Not because we didn't want a baby but because we needed to talk about what another baby might do to our sons health and actually we were more worried about having a healthy child. You know what if he had to watch a sibling doing things he couldn't. Anyway just three months later I ended up pregnant. The first thing the doctor asked me was do you want to terminate I told him to never ask me that again. I was very high risk and the original doctor could not see me. So I had to work with a group of 3 perinatoligist every doctor I saw wanted me to not have my son for one reason or another. I had one tell me I don't know why some one would want to have a baby with cf and I told her to get the ---- out of my room and informed her I had a son with it and was sure this baby had it to told her his name and told her not to ever come near me again. The specialist came in and ask why I thought I was having a boy. I hadn't had a sonogram yet. My pulm was the one that kept me from going nutz. Other doctors told me they thought we might both die because my normal 38% pft's were in the 20's and my blood sugars were in the 400 range. I did what I had 2 just as anyone who in the same fork of the road might have gone the other way because they might not have been able to handle my way.
 
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anonymous

New member
2sickkids if you dont mind me asking did u get your second child tested for cf in the womb or did you just wait till it came out to get the baby tested?
from first post
 
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2sickkids

Guest
I don't mind no we did not test the baby till after his birth. I had always been told I couldn't carry a child and I had lost a baby so I couldn't take the risk of an amnio or cvs. As far as my having cf I will know in a few weeks. After my oldest tested positive doctor told me I had just never been tested due to lack of family history. Chronic bronchitis sinisitis uri lri pneumnia kidney problems as well as bronchiectisis diabetes allergies and if it's a stomach problem I have it. I think I am a symptomatic carrier before being pregnant I was 5'6" and weighed 104 to 114 lbs people always told my god your too skinny. I gained 100lbs while I was expecting both times lost it instantly the first time and have kept some on this time. So I managed to gain weight the first time ever not that happy with it but can't seem to lose what is left. Also I have only had pancritis 4 times between 15 and 17 . But my doctors told me 2 days ago they needed to sweat test me and then do a genetics test. So I'll have to answer that for sure later.
 
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anonymous

New member
thanxs to everyone for your input i am a wee bit closer to making my mind up ..its still not any easier though.
im just going to get the test done and then see what the out come is...........oh god i hope its good new.
ok thanxs all
 
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anonymous

New member
I am the third post from the top. I had the stillbirth at 35 weeks. Apparently, when you have a baby that has CF, the last month of pregnancy is very difficult for the baby. Becuase I chose not to have an amnio with my later pregnancies, (I chose not to because I was worried about preterm labor. I would hate to have an amnio, go into preterm labor and lose a baby that way, and then find out the baby did not have CF). I was induced at 36 weeks. I was treated as a high risk pregnancy and had multiple ultra sounds, biophyisicals, and non-stress tests. I also had to monitor very closely the baby's movements during the day. I know with my fourth pregnancy, which is my daughter who has CF, there was a point during that pregnancy where I did not feel any movement during the day and went to the dr. to make sure everything was ok, everything was fine. But her movements slowed down, just like with my first pregnancy (the stillbirth) towards the 8th month. We went ahead after much thought and became pregnant again. Had a miscarriage. and became pregnant again, with my son, who is a carrier. I know a lot of people who thought it was crazy, and I was even told that I was being irresponisble for becoming pregnant again. My husband and I went into it, knowing full well that we could have another loss or another baby with CF. I know that there are a lot of people who have different views of life and of God and a lot of people will disagree with what I am about to say... My belief was that God was going to take care of me know matter what the outcome would be, I knew that God would take care of my baby no matter what the outcome would be, and that God knew about this baby (and all my other babies) and had/has a plan for each one of them. That is what got me through each of my 5 pregnancies after my stillbirth. I am thankful for each life I was able to carry and I am thankful for the three children I have living with me and I know that one day I will be reunited with my other three.
 
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anonymous

New member
It is more difficult than for the general population due to the thick cervical mucus that we cf patients have... Although I didn't experience any difficulty getting pregnant, I wasn't even trying! I have heard just about all ends of the spectrum, some women have a very difficult time and others who are like me, and have no trouble at all.

Kim
40w/cf
mom to 15 year old w/o cf
 
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JazzysMom

New member
I didnt use birth control for 12 years which included my boyfriend and first husband. However; I was with my second husband for only 10 months when I got pregnant. Granted we had a lot more sex, but he says he just knew how to plant the seed!. MEN?! (No offense guys)i
 
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HollyCatheryn

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>ClashPunk82</b></i>Just out of curiousity how hard is it for a woman with CF to get pregnant?<hr></blockquote><A href="http://www.geocities.com/MurrensNatureMama">www.geocities.com/MurrensNatureMama</A> is a website built to address that sort of question. Check out Fertility, Female Fertility and Improving Fertility for details about why many women with CF are subfertile and what can be done about it.The short answer to your question is that it is all dependant on you, but most women with CF are subfertile to a greater or lesser degree.
 
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HollyCatheryn

New member
To the Anonymous poster who had the CF-related stillbirth:I would email you privately but, I can't, so...I want to commend you for your convictions and your faith. It is rare and precious to see a family who truly trusts God with their lives. It is no easy thing to do, but I can very much relate (though on the other side of the spectrum). All of your children are blessed because you have chosen to give them life and to trust God to know what is very best for them. I hope you stick around and share your strength, faith and story with the rest of us. I am so thankful that you didn't just say, "We decided to try again and we had another baby with CF" or whatever. You are correct that there are many differing worldviews represented here, but I am so glad that you were brave enough to share yours. Thank you!If you can please do email me privately (<A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A>)
 
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anonymous

New member
To the original poster-
My husband and I learned that our first born daughter had cystic fibrosis when she was five weeks old. We both did not question having more children. Our daughter is perfect and we would be blessed with another child that God brought into our home regardless of a cf diagnosis. This being said I was very surprised to find out that our second child had cf as well. Needless to say they are the cutest, most precious children. I decided not to test for cf with our second child. The odds of losing a baby with the amnio are about 1/200. Looking at the odds that I have already experienced with having our first child with cf (without family history) and then the second child with cf, 1/200 was not a chance I am willing to take. We knew that my son had cf when a routine ultrasound showed "bright bowel" in my 6th month.

Regarding whether or not the second child with cf could negatively affect the first child - my daughter (age 4) has always cultured staff. My son (age 2) has cultured e. coli most of the time and pseudomonas twice nine months ago. They have yet to culture the same bacteria. They both have had two clean cultures the last two times they were checked!! I do not keep my kids separate. They have the same toys, etc. I don't let them drink after one another, but that it is it as far as regulating their contact. They love to tackle each other on the ground, etc.

To T.D. - I am sorry for your loss, the pain you are experiencing and I am definelty not one who has the right to judge you. I am not sure how much you know about those with cf. I know when most of us parents like you were told that our kids had cf we also had little, if any, knowledge of what life is like for those with cf and how much it really affects their life. After experiencing life with my two little ones, CF sure does not seem like a death sentence, awful disease to me. My children have not suffered "pain" as you describe it due to this disease. I am not saying, however, that they won't at some point in the future. It might be helpful for you to learn some more about cf before you need to make another possible decision in the future with another baby of yours that might carry both genes. Here is an interview I saw today of a young girl with cf, it might be helpful for you to see someone who actually lives with the disease.
Here is the link - click on "click to play videos" below the picture.
<a target=new class=ftalternatingbarlinklarge href="http://cbs2chicago.com/health/local_story_166162820.html
">http://cbs2chicago.com/health/local_story_166162820.html
</a>Sharon
 
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anonymous

New member
A note to Sharon...We are actually from Chicago too...small cyber world!

We do know quite a bit about CF...learning the hard way through our experiences. We availed ourselves to all of the testing as we are strong believers that God gave us this science to help us, whether the issue be CF, Downs et al. I'm sure your children are beautiful (my daughter is two and I LOVE this age!) but we weren't prepared or willing to subject ourselves, daughter or a child to CF. I am thrilled when I hear of people thriving with the disease...it just wasn't a risk we wanted to take and I appreciate your not judging us for it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Regarding other posts, We do realize that we will face this predicament should we get pregnant again. I had problems conceiving even my first baby and am now even older, but regardless, we feel confident of our decisions to test and test again. I am in the 'field' when it comes to a related form of medicine, so I want to share that the risk of amnios (not for Sharon specifically!) is largely dependent on the physician performing the procedure. It's important to find out the doc's individual stats as that will give you a better idea of risk. For example, CVS, generally has a higher risk than amnio but this takes into account docs who may only do 3-4 procedures a month and are not as versed. Our doctor has done over 11,000 procedures and his m/c rate for CVS is as low as that for amnio. That said, his amnio rate is MUCH lower than the national average, so it's a question of shopping around too. Lastly, on the topic of amnios/CVS, at my age (40+), the rate of chromosomal abnormality is @ 1/11 which is MUCH higher than even the highest m/c rate for a procedure, so for us, it was an 'easy' decision (e.g. a choice between not good and less good). IVF was not a good solution for us (we tried it and it was hard on my older eggs) and natural ended up working for us, so PGD is out, unfortunately, as well.

I realize what a hot button this is to discuss, not only on this board but anywhere, particularly these days. I appreciate your comments and again, would never dream of judging any of you on your decisions and can't imagine that anyone thinks they have the right to judge me either. I just came here to get some comfort as this has been harrowing for us. For those of you who have offered me support, I thank you too!
 
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