Pregnant with CF Child

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shannin75
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 3/14/2006 9:31 AM (GMT -7)   
Hi everyone!  I'm 29 weeks pregnant and recently found out through an amnio that my son is affected with CF.  I've already been doing research and will meet with a pulmonologist in a CF care center next month.  I know CF affects everyone differently, but I guess I'm just looking for any advice or suggestions.  Thanks for any input. :-)

mycfangel
New Member


Date Joined Mar 2006
Total Posts : 12
   Posted 3/14/2006 4:20 PM (GMT -7)   
shannin75 my daughter was born and diagnosed with CF at about 2 weeks old. She is now a little over a month old. Our cf specialist team has her on a vitamin supplement and enzymes. Best suggestions: 
 
Problem:The vitamins stain clothes, don't taste good, make her gag. 
Solution: Let your son suck out of the dropper until it is gone. It will cause less being spilled on clothes and cut down on gagging.
 
Problem: Giving the enzyme can be a pain.
Solution: Give the enzyme with a little applesauce. Then once done rinse his mouth with water to get all the enzymes out. This will help prevent sores in the mouth and on your breasts is you breastfeed.
 
Problem: Sores from taking the enzymes.
SolutioN: Use Utter Cream or Budreau's Butt Paste instead of balmex or desitin. They will work to prevent sores.
 
Every case of CF is different.
 
Emotionally this can be draining and hard not only on you, but on your whole family. It helps talking to other families.
 
If you have other questions let me know. I will try and answer them. 
 

shannin75
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 3/15/2006 10:35 AM (GMT -7)   
Mycfangel, thank you for replying so quickly. I'm jotting down questions to ask the doctor when I meet her next month. I've also started forming a daily record page for my son--I know I'm probably going overboard right now. I mean, he's not even here yet! It's just all so overwhelming--I want to be as prepared as I can be.

mycfangel
New Member


Date Joined Mar 2006
Total Posts : 12
   Posted 3/15/2006 9:43 PM (GMT -7)   
We got a book from our doctor that had a lot of helpful information in it. The book is geared towards parents of young children with CF. It has a page to write down the questions we have for the doctor. I like it because I can write down questions as I think of them. It has a checklist of which doctor to call when symptoms or issues arise. Like if we should contact or see the pediatrician or contact/visit the CF clinic. There is also a page where we can put the CF teams information like addresses, phone numbers, hours, which staff member does what, information about the pharmacies we use, and the prescirptions given to our daughter with the refill number. I like it because everything is organized and all in one spot. It has a "What to feed my Baby" section to fill in. We give copies of this to our daycare, parents, and anyone that helps take care of our daughter. We can even list what medicines she gets and at what meals. It really helps ease my mind about leaving her with people. I know that she will be taken good care of. There is also a form for when the child gets bigger and eats table foods to fill in. The book goes over symptoms and things to watch for regarding CF. The best part is the Child Baseline form which is sounds like you are already doing on your own on a daily basis. It helps monitor changes and bring a problem to our attention sooner. That way I can contact her CF team if I have concerns. The book also goes over treatments and treatment plans. At the end, it shows techniques on Postural Drainage for infants and toddlers. It's a good resource to look at in case I forget how to do something. I don't think you are going overboard. It's good to take a proactive approach. This disease can be overwhelming, but just remember we are never given more than we can handle.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 3/16/2006 11:23 PM (GMT -7)   
Shannin,

The pulmonologist and the CF Care Center team will educate you on everything you need to know before the baby comes, so, try not to worry. You have it easier than the rest of us had or is having, because you will be able to consume the education easier without having a newborn to distract the thinking process. Your baby will seem normal at birth, please do try to stick to a plan that the CF Center sets out for you.

Let us know how your doing.

MyCFAngel, your doing a fine job and adjusting well it seems by your posts.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


shannin75
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 3/17/2006 5:34 AM (GMT -7)   
Thank you Twinstride for the encouragement!  I decided to have the amnio done for that very reason--I couldn't imagine dealing with a newborn (and I have a 15 month old daughter too--she just had a DNA screen done yesterday for CF) and finding out about CF 2 weeks later.  Your hormones are flying anyway!  I guess my only concern right now is deciding on which care center would be best.  I'm setting up a couple of meetings and have some questions prepared for 2 centers.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 3/18/2006 5:32 PM (GMT -7)   
Shannin,

One more question...by doing the amnio, is it possible that your baby is just a carrier instead of actually being affected?

I was wondering because my daughter (who does not have CF)is a carrier of the same mutation that my boys have (tested by genetic testing, blood), but, she is only a carrier.

It would be interesting to see a sweat chloride test done to actually see if your baby has it. The sweat testing will be inaccurate at early infancy (just a FYI). My boys tested 96% positive for CF at age 6 months.

I have never personally known a mother to have the amnio done prior, so, I am totally clueless here and is very interested in your information.

Hugs!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


shannin75
New Member


Date Joined Mar 2006
Total Posts : 4
   Posted 3/19/2006 7:44 AM (GMT -7)   
Hi Twinstride!  Of course, the doctor said that the amnio isn't a "looking glass", but they strongly believe that our son will have CF.  They were able to tell that he has been affected with both of our genes.  We'll also have the sweat test done probably 2 to 3 months after he's born just to confirm.  But for now, they'll be treating him as if he has CF.  Believe me, this is foreign territory, so I'm learning just as you are! :-)
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