Just learning

[anonymous]

Hi...
I am now 16w pregnant with our 2nd child. We recently found out that my husband and I are both carriers of the same strand of the CF gene. I am just trying to educate myself now for the possibility of parenting an infant with CF. Just wondering if you could help out with a couple questions. 1. Is there anything I can be doing now to prepare for the lifestyle changes that may occur after the baby's birth? (ie putting an air filter in the nursery?) 2. aas long as the baby does not have allergies, should he/she be ok around the cat? 3. Is there anything that I can expect in advance? 3. Has anybody done an amniocentesis during pregnancy to test for CF? (We are really unsure due to the risks of amnio, and we're not sure what to do). Thanks so much!

 

[julie]

Well, I am the wife of a wonderful man with CF so I can't really answer the baby questions (there are many who can and will though) but as far asyour questions about the cat, We have 2 dogs and 2 indoor only cats and my husband does fine. You will notice many CFers on this site do have animals. There is a search feature on this site (top R corner) and if you type animals you will see a few different posts where it's been discussed, might be beneficial and insightful to check out if you are interested. If there are no animal allergies involved (separate from the CF factor), your child shouldn't have a problem.

As far as the question about you and your hubbie both being carriers, here is a link to something I put together on my site, basically your child has a 25% chance of having CF, a 25% chance of NOT having CF and NOT being a carrier and a 50% chance of being JUST a carrier (like you and your husband). Here is a link if you are a visual person, you and your husband would be category A. <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/Where_to_begin_carrierTesting.html">http://www.cysticfibrosismaleinfertility.com/Where_to_begin_carrierTesting.html</a>

Hope this helps a bit, while waiting for more responses (it seems to be really slow through this holiday season), you can also use the search feature and type in amnio, new, new to site, pregnant, carriers... stuff like that and read about other parents who asked some similar questions.

Let us know if there are any more questions you have and welcome to the site!

 

[ashton2005]

Welcome to this site. I think that you will find a lot of answers on here. It helped me and my husband a lot when we found out that we were both carriers of the DF508 gene.. Quite honestly the best thing that you can do is educate yourself wich this is a good place to start.. There are many people on here like myself that can hopefully help you.. I now have a almost 10 week old baby that has CF. I to found out during my pregnancy that i was a carrier and then that my husband was a carrier also. I did elect to have an amnio just so i could prepare myself for what was coming and not sit around and wonder what was going to happen.. unfortunatly my son is still in the NICU due to having to have surgeries. He had a bowel obstruction that ended up causing his bowel not to form all of the way. I hopefully am no scaring you but just wanted to give you our experience i think that is what helped us through is everyone elses experiences.. It does look as of now that we are going to be bringing him home in the next week.. As for the animals our pulmonologist told us that unless ashton showed allergies to animals that actually having on may end up doing him good almost like having a companion at home..The air filter is up to the pulmonologist. but one thing definetly to try and do is that if anyone smoke around you or in your house may want to stop because after birth cigarrette smoke can irratate the baby,. It is hard to tell you what to expect due to the many variations that i have found out about but i can say the past 10 weeks have been rather hard. but you will make it through it if your baby has cf and remember that there are a lot of people on here to talk to even if you just need to vent or get answers. By the way where are you from?

Sorry its a little long just trying to help as much as i can
Christi
ASHTONS mommy 10 weeks old with cf
ABBI"S mommy 5 yo w/o cf

 

[anonymous]

First things first, best wishes to you and your husband as you go through this difficult time. Sometimes, not knowing is worse than knowing, even if it's bad news right? Thoughts and prayers to you.... Second, I am the father of an awesome 5 year old boy with DF 508. I think you are at a huge advantage knowing about this possibility upfront! If your baby is positive, you'll be able treat him/her from day one, and that has to be a huge advantage. It was for us...doing chest PT at 2 weeks of age was odd, but has proven to have been beneficial.

Also, assuming that you are very loving parents, don't be too devastated if it's a positive test result....really. I have gone from devastated, sobbing like a baby for hours, to actually being thankful that God created him precisely like he did! I know that sounds weird, but I am serious. I love that little dude so much just as he is, that the CF has almost become a non-issue. I never ever look at him and feel sorry for him, or us as parents....I just look at him as our special little Ryan. (I call him "Guy Smiley" from the old Sesame Street shows because he is constantly happy and smiling)

Granted, we have gone way overboard trying to keep him healthy and he has been. Only had one surgury to blast out the impacted snot from his sinuses last fall, but other than that, he's been the healthiest member of our family for 5 year now! No kidding!

Keep your chin up! Either way, you are going to have a very, very special baby to love!!!

Dan
Father of Ryan w/CF
Megan w/o CF

 

[anonymous]

Hi, congratulations on your little bundle-to-be (CF or not). I am also pregnant with #2 right now (22 weeks) and my daughter who is 2.5 has CF. We chose to have an amnio done at 16 weeks bc we wanted to be prepared mentally and physically for this baby. I was VERY nervous about having the amnio, although on average the risk is .5% or 1 in 200 and the doctor who did my amnio does well over a hundred of them each year. I personally cannot imagine going through an entire pregnancy where there is a 1 in 4 chance of CF without knowing if my baby has it BUT I know plenty of others who have done just that. About the cat, as long as there aren't any allergies I don't see why that should be a problem. Having a purifier is somewhat of a controversial topic bc it seems that some purifiers can give off toxins - I really don't know much about that but if you search around this site you can find posts on it. We have a whole house purifier that attaches to our furnace and we LOVE it - although we don't have any proof that it helps our daughter as far as CF but I am pretty sure that she has my wonderful (NOT!) sinuses and it really does help my sinus troubles. Sinus build-ups/infections can cause trouble in the lungs of a CFer if they get out of hand.

Anyway, congrats again and please let us know what you decide to do!

 

[ReneeP]

Hi and welcome! And Congrats on the baby coming... I have two daughters with CF. Unfortunately we had no clue during my first two pregnancies that either of us carried a CF gene. When my second child was about 9 months old her health took a drastic turn for the worse and she just couldn't get well. She almost died from malnutrition and pheumonia at different times. She was in the hospital several times. By the time she was 2 1/2 she was way underweight, didn't digest anything and never stopped wheezing. Finally after putting the child through everything imaginable (except a sweat test) I happened upon some medical books and was reading about CF. I knew instantly that is what was wrong with her and demanded the dr do the test. He argued with me about it but I persisted and the test was done. Of course it was positive. It took a few months to get her cleaned out and back to normal and she was hospitalized on her third birthday for IV antibiotics and from then on she has never been sick again. She just celebrated her 11th birthday a couple of weeks ago. Her last hospital visit was the one on her third birthday. Then I found out I was pregnant again. I was very scared because I didn't intend to have anymore children (my first child does not have CF) so I decided to have an amnio just to prepare myself. I knew if I didn't the stress I would go through worrying and wondering would not be good for myself or the baby. I had the amnio at 17 weeks and found out very quickly that the baby did have CF. I was upset of course, but at least had time to mentally prepare myself. I was able to prepare to have her at a different hospital that would have been able to handle her should anything go wrong. Fortunately nothing did go wrong and she was perfectly healthy (other than CF of course). She is now almost 7 and has never had any lung complications. She has some sinus problems and is going to have a second surgery for that next month. Knowing ahead of time was such a blessing for her. She didn't have to suffer like my other daughter did. We started treatments right from birth that prevented her from having to suffer.

Whether or not to have an amnio is a very personal decision. Even though the risks are low they are still there and you have to be able to accept that. Even if it were 1 in a million chance that something would go wrong, if that 1 is your baby the statistics don't matter. I guess it depends on how worried you are now. If you are going to stress out throughout the pregnancy worrying about it that is not healthy either. If that isn't the case than maybe the risk isn't worth it for you. Whatever you choose, I wish you the best and you are always welcome to come here for support or to have any questions you may have answered.

Just out of curiousity, I was wondering about your first child...You say this is your second and both you and your husband carry the gene...Has your first child had genetic testing? I'm just curious. As I said earlier, my first child does not have CF. He did have a couple of sweat tests just due the diagnosis of his sister but we've never had the genetic testing to see if he is a carrier. I plan to have that done before he gets much older though just so he knows prior to having any children himself.

My best to you either way!

Happy New Year!

 

[anonymous]

Thanks everyone for the very thoughtful posts. I feel like I have a place now to start my research (and get support if the time comes). To answer some questions, we had no idea with our 1st (an adorable 3yo son) that we were both carriers. I happened to get tested this time around (I didn't even know that was one of the tests...its still very new and un-used in IL) and then we followed up with my husband who was positive. They said we had the same strand, and I saw a few of you mention 508, but I have no idea. So we were given the option of genetic counseling and an amnio, all of which would take place on Jan 9th. We haven't officially decided anything yet, but we will go to the appt and decide from there. Its really helpful to know that there are some things we could do right away if we knew ahead of time...our pediatrician seemed to think that we really wouldn't do anything except the sweat test when the baby turns 6 months. Our son was also given a referral for the sweat test, so now I'm waiting to contact a hospital downtown after the holidays to schedule it. Thanks again, everyone, and I wish a happy and *healthy* new year!

 

[ashton2005]

Good luck at your appointment in january. You will get a lot of info at once and it may seem overwelming but either way it is good to know.. Where in Illinois do you live. We are in indianapolis indiana.. again good luck

christi
ashton 10wks w/ cf
abbi 5yo w/o cf

 

[anonymous]

Hi-

I noticed that you are in Illinois and you also mentioned "downtown" so I'm assuming you mean Chicago. My daughter is a patient at the CF clinic at Children's Memorial. They have a great staff there. Very caring, knowledgeable and personable. I highly recommend the CF clinic. They also hold clinics in Westchester and in the northern suburbs. (I can't recall where exactly.)

If you need anymore information please let me know.

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

Hello
I am also from Chicago and i agree that the doctors at Children's are really great. I am at the adult clinic now and I wish that i wasn't because I am not clicking as well with the doctors there as well. but children's is fabulous and you will get a lot of great support if the time comes

Sue

 

[anonymous]

I don't think you have to wait until the baby is 6 months to have a sweat test done.

 

[JazzysMom]

The sweat test cant always be performed properly if the patients are too young because they cant get enough sweat for the sample. This is why there usually is an age limit, but its not written in stone!

 

[HD]

I am also in Chicago, but at the Rush Clinic. My daughter was 3 when my son was diagnosed at 6 months old. We had no idea we were carriers either. Ian was diagnosed through the pediatric gastroenterologists at Rush and we stayed with the clinic. They have been great, very supportive and try and include my daughter when she comes with. They genuinly like Ian which as a parent I guess makes a difference! The NP is great as well. I'm also an NP and I appreciated that the docs and the NP talk to me as a parent, but knowing I know what I'm talking about! I am so greateful to live in Chicago where I dont' have to travel hours to get to the clinic and I have a choice between 3 excellent clinics, Childrens, Rush, and U of C. Feel free to email me if you have any questions! You didn't mention where you were going for prenatal care.
Heather
hduncan@ix.netcom.ocm

 

[anonymous]

Hi there,

I thought I'ld reply since I've been through a similar experience. I had an abnormal ultrasound when I was 20 weeks pregnant with my daughter(She just turned 3). This prompted the docs to investigate further with genetic testing on my husband and i and we found out we are CF carriers. I then had to have my then 4 year old son sweat tested to make sure he did not have CF and he does not. After much consideration, I did have an amnio, and found out my daughter did in fact have CF. It was not an easy decision to go through with the amnio. It is a very personal decision. I did research the doc who did the amnio, she is an expert in the field in genetic testing and well-known, so basically we got the best doc we could to do the amnio for the least risk of causing harm to our unborn baby. Also, what was helpful was meeting with a CF doctor at our children's hospital for a consultation while I was still prego to answer all the questions we had related to caring for a baby with CF and what we could do to keep her healthy. I remember the doctor said the research being done on Cf is a "moving train", meaning each year a baby is born with Cf the life-expectancy is increasing. So much research is being done, new therapys will come out for CF'ers to take advantage of and extend the quality and quantity of life.

For your questions; 1) the biggest thing I ahve done in life-style changes is quit my job and be a stay at home to my 2 kids. I was a nurse before I had my daughter and wanted to take time off anyway(before I knew she had CF) now i plan on going back to work at some point but right nowI feel I am the best caretaker for my daugher.2) We have 2 large cats and my daughter has not had any reaction to them that I am aware of, the CF doc did discourage the cats but we decided it would be too traumatic to get rid of the cats for our son and it's worked out fine.

Hope this helps

Rebecca(mom to Sammy 7 no CF and Maggie 3 with CF)

 

[fourkidsmom]

I have had 2 separate amnio's, not that if the baby had cf it would change anything for me, we would still have it no matter what. Each time I am glad I had it done and found out ahead of time so I was a little more prepared. The first one I had done was positive for cf, our son is now 5 and the second I had done was negative. It is a quick and pretty painless procedure, it is just the idea of what they are doing to you.

Hope this helps.

Angie

Step-Mom to Brittany 13 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome 9q deletion q21.2 q22.1

 

[anonymous]

((hugs))
We have been through the same thing. We found out during my second pregnancy that both my husband and I were carriers. We did decide to go ahead and have the amino (not just to check for cf, there were other abnormalities). I have to tell you that the amnio was one of the worst experiences of my life-- very intense pain and huge feelings of guilt for intruding on my little boy's space! However, with the amnio we were able to find out that our little boy is not even a carrier. I hope the very best for you.
If you do decide to go through with it, just know what you might be in for. I had heard from friends that an amnio was "no big deal," but it was a huge deal.
Good luck and God bless-

Brad and Laura- cf carriers
Dad and Mom to Brendan- cf carrier, and Brit- not a carrier!

 

[Alyssa]

I don't agree with your pediatrician about not doing anything until 6 months old (yes, I know you have to wait until 6 months to be able to collect enough sweat for a sweat test ? it?s the waiting and doing nothing until 6 months that I disagree with). Maybe I misunderstood your wording or his, but it seems very irresponsible to me to think a doctor could think he could predict something like that -- assuming you do not get the amnio, so you do not know if the baby has CF or not -- so, worst case scenario is your baby does have CF and needs immediate medical intervention -- obviously measures would be taken at birth but he (the pediatrician) has not accurately prepared you for this possibility by saying to do nothing until 6 months.

On a different note -- let's say with or without having the amnio (and knowing ahead of time,) your baby is born with CF -- your baby could very well be very healthy at birth and for many years to come. My children are now 17 and 19 years old. We didn't even get a diagnosis on them until they were both in their teens. They are both mild variant genes and pancreatic sufficient -- so in plain talk their lung & sinus involvement is very mild and they have no digestive issues at all. Be wary of use of the sweat test only -- it can be a cheap, useful test to start with but both of my kids test right around the borderline numbers 38 and 41 -- technically my daughter (who has more lung issues than my son) does not "qualify" for the CF diagnosis because a 38 sweat test number is considered "normal" but a blood (genetic) test proves she has two well known CF genes -- no arguing with that -- so the POINT to my whole looooooong email here is ---- if you do not get the amnio and the baby appears to be healthy at birth still ASK FOR GENETIC TESTING ----- so you can be sure.

 

[anonymous]

Samantha was sweat tested at three months of age and tested positive with a 92 and an 88. So the six month age is not necessarily the rule.

Maria (mom to Sami 2 1/2 w/cf)

 

[anonymous]

Hi there,

Just wanted to add that we were told if we did not want to do the amnio, we could have the baby's fetal cord blood tested for the Cf mutations when she was born. the test results take about 2 weeks. With CF early diagnosis is key to maintaining a healthy start . This is just another option that was pointed out to us if we had decided against an amnio. Maybe your doc is not aware of this test?

Rebecca(mom to Sammy no CF and Maggie 3 with CF)

 

[1princess]

Congrats on the new baby!! We also have a very healthy beautiful 3 year old and are expecting our 2nd baby at the end of the month!!!! We also found out during this pregancy that my husband and I both carry the same genetic mutation for CF. We decided not to do the amnio, but instead had Level 2 ultrasounds done routinely so they could look for a problem with the bowels - this is really the only thing that they said would be a problem as soon as the baby was born - luckily - everything looks normal. We are having the cord blood tested when she is born and will wait out the two weeks for the results. I was pretty stressed at first, but have found through being on this site and talking to our pediatrican that I feel prepared - or at least as much as I can until I am actually faced with it. I have actually just prepared myself for the worst and if I am wrong, then great. My cousin has CF and just had twin boys and she has had a great life so I know whatever we are faced with we can handle.

However, now that we know about being carriers, we have made the decision to not have any more kids - I just don't want to take the chance. Good luck and enjoy your pregnancy!