need some advice

[ColbyCheese]

I am 6 months pregnant and my boyfriend and I are both cf carriers. I did not get the amnio done. I have done a lot of research but I don't know any one personally with the disease. I just found this website tonight and was wondering if any one could lend some experienced advice. I just want to know what others would tell someone in my position. I would appreciate it, Thank You!

 

[ColbyCheese]

I am 6 months pregnant and my boyfriend and I are both cf carriers. I did not get the amnio done. I have done a lot of research but I don't know any one personally with the disease. I just found this website tonight and was wondering if any one could lend some experienced advice. I just want to know what others would tell someone in my position. I would appreciate it, Thank You!

 

[Emily65Roses]

There's a lot of things that come to mind immediately. But I don't wish to overwhelm you so I'll just tell you the stuff that's relevant right now.

The main thing I say would be even if the child seems healthy, test it the day it's born. Make sure to test it at a CF accredited center (other places, no matter how good they are, generally aren't good at treating or understanding CF). The child will stay healthy a hell of a lot longer if you start meds and therapies ASAP. If the child seems healthy and has CF, that's the best possible CF situation, really. Because doing meds can keep the child that way much longer.

The other thing I wish to tell you is if your child has CF, not to allow yourself to get too overwhelmed. Don't let the life expectancies or anything drive you nuts. They change all the time. And the babies being born now are getting such a huge advantage over those of us that are already adults. You can prevent lung damage a lot longer than you used to be able to. When I was born, my parents were told I had a 50/50 chance of seeing 18. And now I'm 22, and still have 60-70% of my lung function. So don't let the numbers freak you out. And come back and ask anything under the sun that you like.

 

[Emily65Roses]

There's a lot of things that come to mind immediately. But I don't wish to overwhelm you so I'll just tell you the stuff that's relevant right now.

The main thing I say would be even if the child seems healthy, test it the day it's born. Make sure to test it at a CF accredited center (other places, no matter how good they are, generally aren't good at treating or understanding CF). The child will stay healthy a hell of a lot longer if you start meds and therapies ASAP. If the child seems healthy and has CF, that's the best possible CF situation, really. Because doing meds can keep the child that way much longer.

The other thing I wish to tell you is if your child has CF, not to allow yourself to get too overwhelmed. Don't let the life expectancies or anything drive you nuts. They change all the time. And the babies being born now are getting such a huge advantage over those of us that are already adults. You can prevent lung damage a lot longer than you used to be able to. When I was born, my parents were told I had a 50/50 chance of seeing 18. And now I'm 22, and still have 60-70% of my lung function. So don't let the numbers freak you out. And come back and ask anything under the sun that you like.

 

[Diana]

This is an easy one. Enjoy your child no matter what. With children if it's not CF to worry about then it is just something else. I am dreading the day that my daughter is old enough to go to the park by herself (her dad thinks 21 is too young!).

If your child does have CF then as previously stated try not to get overwhelmed. Learn as much as you can and you will see it becomes your normal way of life. I personally am 25 and have 2 beautiful daughters both with CF. Sure I would love to take their disease away but the reality right now is that they do have it and we cope as best we can. I am absolutely amazed by how many discoveries they make with CF everyday and there is no reason to not believe that a cure or something amazing to assist with this disease will be found in this lifetime.

My advice to you is to enjoy your pregnancy and take whatever comes afterwards in your stride. It is obvious that you already adore this child as you decided an amnio was not necessary....although some do get one just for peace of mind. I hope all goes well for you and your family.

Could I also add that you shouldn't over do the research just yet. One because you don't have the diagnosis yet which may just make you anxious during a time that should be pure joy and two because there is a lot of old information out there which can seem very scary. When you are pregnant it is only natural to wonder what your child will be like and what they will grow up to be - some of the information you find will only make you sad when there is so many reasons to be optimistic.

God Bless

 

[Diana]

This is an easy one. Enjoy your child no matter what. With children if it's not CF to worry about then it is just something else. I am dreading the day that my daughter is old enough to go to the park by herself (her dad thinks 21 is too young!).

If your child does have CF then as previously stated try not to get overwhelmed. Learn as much as you can and you will see it becomes your normal way of life. I personally am 25 and have 2 beautiful daughters both with CF. Sure I would love to take their disease away but the reality right now is that they do have it and we cope as best we can. I am absolutely amazed by how many discoveries they make with CF everyday and there is no reason to not believe that a cure or something amazing to assist with this disease will be found in this lifetime.

My advice to you is to enjoy your pregnancy and take whatever comes afterwards in your stride. It is obvious that you already adore this child as you decided an amnio was not necessary....although some do get one just for peace of mind. I hope all goes well for you and your family.

Could I also add that you shouldn't over do the research just yet. One because you don't have the diagnosis yet which may just make you anxious during a time that should be pure joy and two because there is a lot of old information out there which can seem very scary. When you are pregnant it is only natural to wonder what your child will be like and what they will grow up to be - some of the information you find will only make you sad when there is so many reasons to be optimistic.

God Bless

 

[anonymous]

My son is 3 and has CF. I like you also found out when I was pregnant that I was a CF carrier. My doctors told me not to worry too much because there is a 1 in 4 chance of the child not having CF. He was diagnosed at 2 weeks from the newborn screening that he had CF, so was immediately put on medicine at 3 weeks of age. He's been on pancreatic enzymes. Dont do too much research online they make it sound so much worse. Best bet is to call your local CF Foundation and see if they can send you all the information that they have. My son is very healthy (knock on wood) the main issue he has is very stinky poops, which I can handle. Although I do advise that might want to become a stay at home mom, I am, it keeps them healthier and keeps them away from all the germs that little ones get so easily. You can always work form home, currently I started selling Avon, a little bit of income is better than none, it gives that extra bit of spending money. If the baby does have CF, you might want to try to get Medicaid, it helps pay for all of the medicines, I dont have to pay anything, which is great because CF medicines are so expensive. If you need any more information or just someone to talk to please dont hesitate email me at dawnnicolerumph@yahoo.com. I have learned so much in the past 3 yrs, as well as put on multiple fundraisers (6 in the past 3 yrs).

Dawn
son Austin -3 has CF
dawnnicolerumph@yahoo.com

 

[anonymous]

My son is 3 and has CF. I like you also found out when I was pregnant that I was a CF carrier. My doctors told me not to worry too much because there is a 1 in 4 chance of the child not having CF. He was diagnosed at 2 weeks from the newborn screening that he had CF, so was immediately put on medicine at 3 weeks of age. He's been on pancreatic enzymes. Dont do too much research online they make it sound so much worse. Best bet is to call your local CF Foundation and see if they can send you all the information that they have. My son is very healthy (knock on wood) the main issue he has is very stinky poops, which I can handle. Although I do advise that might want to become a stay at home mom, I am, it keeps them healthier and keeps them away from all the germs that little ones get so easily. You can always work form home, currently I started selling Avon, a little bit of income is better than none, it gives that extra bit of spending money. If the baby does have CF, you might want to try to get Medicaid, it helps pay for all of the medicines, I dont have to pay anything, which is great because CF medicines are so expensive. If you need any more information or just someone to talk to please dont hesitate email me at dawnnicolerumph@yahoo.com. I have learned so much in the past 3 yrs, as well as put on multiple fundraisers (6 in the past 3 yrs).

Dawn
son Austin -3 has CF
dawnnicolerumph@yahoo.com

 

[anonymous]

I'd say try not to be overly anxious about the possibility of a baby with CF, but make sure to get the baby tested right away - the standard genetic test only picks up a handful of varieties of CF so be sure the Dr. is informed enough to order the advanced test from Quest if s/he thinks the standard one might turn up a false negative. The reason I say do the testing right away is because our son was not diagnosed until over a month after we got home and that month was a lot of wasted grief for everyone because babies with CF usually need to take digestive enzymes to get proper nutrition from their food.

And ignore anything you read anyplace about statistical life expectancies: those statistics only tell you what happened in the past to other people born before and under different circumstances; they truly have no predictive power one way or the other for any one person with CF living today or in the future.

-from a Dad of a completely normal, happy, toddler who just happens to have CF

 

[anonymous]

I'd say try not to be overly anxious about the possibility of a baby with CF, but make sure to get the baby tested right away - the standard genetic test only picks up a handful of varieties of CF so be sure the Dr. is informed enough to order the advanced test from Quest if s/he thinks the standard one might turn up a false negative. The reason I say do the testing right away is because our son was not diagnosed until over a month after we got home and that month was a lot of wasted grief for everyone because babies with CF usually need to take digestive enzymes to get proper nutrition from their food.

And ignore anything you read anyplace about statistical life expectancies: those statistics only tell you what happened in the past to other people born before and under different circumstances; they truly have no predictive power one way or the other for any one person with CF living today or in the future.

-from a Dad of a completely normal, happy, toddler who just happens to have CF

 

[anonymous]

good luck to you and i hope you have a normal birth without your baby having CF.
Please whatever the outcome don't call CF a desease it is a life threatening condition.

Thanks

 

[anonymous]

good luck to you and i hope you have a normal birth without your baby having CF.
Please whatever the outcome don't call CF a desease it is a life threatening condition.

Thanks

 

[Tessalonikki]

Hello, and first of all congratulations on your pregnancy!

I have been in the same situation as you, however my partner and I did not know that we were carriers of the defective gene. We were surprised at birth when my son was born with an obstruction in his colon. I would recommend to get several ultrasounds lined up and get closely monitored for any signs of intestinal problems during your pregnancy. It made all the difference in the world for me when I had my second baby. However, keep in mind that these problems do not occur in everybody with CF, but having a great network of doctors in place and being prepared for all odds helped me be much more relaxed and confident when it came time to give birth. All the best to you with your remaining pregnancy...take care.

Tanja (Mom of Nichols 3w/cf and Tessa 14 months w/cf)

 

[Tessalonikki]

Hello, and first of all congratulations on your pregnancy!

I have been in the same situation as you, however my partner and I did not know that we were carriers of the defective gene. We were surprised at birth when my son was born with an obstruction in his colon. I would recommend to get several ultrasounds lined up and get closely monitored for any signs of intestinal problems during your pregnancy. It made all the difference in the world for me when I had my second baby. However, keep in mind that these problems do not occur in everybody with CF, but having a great network of doctors in place and being prepared for all odds helped me be much more relaxed and confident when it came time to give birth. All the best to you with your remaining pregnancy...take care.

Tanja (Mom of Nichols 3w/cf and Tessa 14 months w/cf)

 

[eli]

Congratulations on your pregnancy.

I would also say, enjoy your child no matter what. When we first found out about our daughter we were in shock and it took us a few months to deal with it and except what had happened. But we were so busy worrying that we were forgeting what a preciouse little angel<img src="i/expressions/angel.gif" border="0"> god had given us.

I think you also need to prepare yourself, learn as much as you can about CF so that you are not overwhelmed by info from doctors and specialists, like we were. It will help you understand and deal with whatever comes your way.

Good luck and best wishes
Eli<img src="i/expressions/angel.gif" border="0">

 

[eli]

Congratulations on your pregnancy.

I would also say, enjoy your child no matter what. When we first found out about our daughter we were in shock and it took us a few months to deal with it and except what had happened. But we were so busy worrying that we were forgeting what a preciouse little angel<img src="i/expressions/angel.gif" border="0"> god had given us.

I think you also need to prepare yourself, learn as much as you can about CF so that you are not overwhelmed by info from doctors and specialists, like we were. It will help you understand and deal with whatever comes your way.

Good luck and best wishes
Eli<img src="i/expressions/angel.gif" border="0">

 

[MHfour]

My son is almost 6 months old and like you we found out when I was pregnant that we were both carriers. We did not do amnio testing because it wasn't going to change our decision to have the baby. He's a beautiful, smart, funny little boy and we're very lucky. He tested positive in the newborn screen and he tests borderline on the sweat test. He's been receiving treatment since he's 3 weeks old. Make sure you don't go searching the web for information - it'll terrify you. Go to CFF.org and get information on your nearest chapter and care center. Its important that you get information from reliable, trusted sources. I wish you all the best on a safe, healthy pregnancy and baby.

 

[MHfour]

My son is almost 6 months old and like you we found out when I was pregnant that we were both carriers. We did not do amnio testing because it wasn't going to change our decision to have the baby. He's a beautiful, smart, funny little boy and we're very lucky. He tested positive in the newborn screen and he tests borderline on the sweat test. He's been receiving treatment since he's 3 weeks old. Make sure you don't go searching the web for information - it'll terrify you. Go to CFF.org and get information on your nearest chapter and care center. Its important that you get information from reliable, trusted sources. I wish you all the best on a safe, healthy pregnancy and baby.

 

[Alyssa]

Hello,

Pretty much DITTO on what others have posted

1) congrats!
2) don't worry too much
3) ask about an ultrasound to look for obstruction
4) don't fear the worst -- if you kid does have CF it could be a very mild case and most of what you read about will not be an issue for you.

I want to correct one thing already posted (at least I think I right) one poster said 1 in 4 chance of NOT having CF -- I believe it is correct to say that parents who are both carriers have a 1 in 4 chance of producing a child WITH CF. Or stated another way -- there is a 25% chance of producing a baby with CF if both parents are carriers. So the odds are in favor of NOT having CF.

 

[Alyssa]

Hello,

Pretty much DITTO on what others have posted

1) congrats!
2) don't worry too much
3) ask about an ultrasound to look for obstruction
4) don't fear the worst -- if you kid does have CF it could be a very mild case and most of what you read about will not be an issue for you.

I want to correct one thing already posted (at least I think I right) one poster said 1 in 4 chance of NOT having CF -- I believe it is correct to say that parents who are both carriers have a 1 in 4 chance of producing a child WITH CF. Or stated another way -- there is a 25% chance of producing a baby with CF if both parents are carriers. So the odds are in favor of NOT having CF.