My baby-to-be may have CF

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tmoss
New Member


Date Joined Sep 2004
Total Posts : 1
   Posted 9/8/2004 5:14 PM (GMT -7)   
I am pregnant and my husband and I just found out we are both carriers of CF; therefore there is a 25% chance our child will be born with CF.  This is our first child; we are meeting with a genetics counselor soon.
 
I have been doing research on the disease, but at this point I still have tons of questions.  Although I am trying to stay positive and praying everyday, I am still very worried.
 
What can we expect if we have a child with CF?  I am sure there are others that have been in this same situation.  Can someone share their story and how they dealt or are dealing with the situation?
 
Thanks,
tmoss

Molly W
New Member


Date Joined Sep 2004
Total Posts : 1
   Posted 9/28/2004 1:11 PM (GMT -7)   
Hi TMoss,
 
My name is Molly and my husband and I have a 15 month old baby boy.  He has CF and we didn't know he had the disease until a bowel obstruction was discovered when he was 3 days old.  Of course, we now know that we are both carriers of the mutated gene.  No history of the disease anywhere in our family.  This is also our first child.  He had 2 surgeries by the time he was 2 months old and today is doing very well.  We're accustomed to his daily requirements which consists of pancreatic enzymes w/every meal, zantac and special vitamins.  Daily chest therapy hasn't begun yet but probably will before 2 yrs. of age.  That will be a big change but one we will welcome b/c it will keep him healthy.
 
There is no doubt we were devastated about the diagnosis but our son is more precious to us than ever.  He is happy and full of personality and will live a normal, healthy life.  People w/CF have a brighter future then ever before.  People are marrying and having families of their own today.  There is so much to discuss about CF and I'd be happy to share more of our experience or talk to you about any questions you may have. 
 
All the best,
Molly

EKL
New Member


Date Joined Dec 2004
Total Posts : 3
   Posted 12/3/2004 9:13 PM (GMT -7)   

TMoss,

Were you able to meet with the genetics counselor?  I would be interested in hearing an update on your situation.  My husband and I also just found out that we are both carriers of the CF gene.  We had planned to start a family in the next year or so.  We are obviously now facing some difficult decisions.

Thanks for sharing.

 


oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 9/20/2005 2:49 AM (GMT -7)   
hello all... i know i am not going to be a mother any time soon... but i am 18 yrs old with c.f. and i am very glad my mom and dad didnt know about c.f. bc i dont think they would of had me or my brother...and i love life, i am so glad im here.... my treatments and everything else i have to do... is just another part of my daily routin!

oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 9/20/2005 8:36 PM (GMT -7)   
Hello All,

I am the mom of oppie on this list and she doesn't yet know I am making this reply using her sign on name, but I just wanted to tell tmoss and the other either expectant or trying to be expectant parent carriers what life is like with a child with CF. I have two, Olivia who is oppie, 18 and Kevin who is 20. Even though they weren't diagnosed until the ages of 12 and 15, life was very hard prior to that with divorce, custody battle and the death of grandparents/parents. So getting that diagnose just about wiped me out as a single mom, but what I can tell you is that people with CF seem to be the kindest, caring and the STRONGEST people I've ever met. Having a child with CF is not easy with all the daily routines of treatments and medications, but having a child with CF makes you look so differenlty at the true meaing of life......you find who you really are and what is really important, and that child with CF is the ones who show you that. Its not easy, but I hope that you all will embrace the thought of it being a priviledge to be the parent of a CF child, it will enlighten your life and it will fill your heart with more love then you have even known.....You will find strength and sorrow, joy and sadness all wrapped up in one......thanks for letting me tell you about us.....and Olivia, hope you didn't mind if I snuck in here on you.....I love you!!!!!!
Deb, Mom of Kevin 20 and Olivia 18, who both happen to have CF

kristins mom
Regular Member


Date Joined Sep 2005
Total Posts : 27
   Posted 9/23/2005 2:21 PM (GMT -7)   
 I can understand your anxiety but I just wanted to tell you my story.  My daughter was 2 when she was diagnosed so when I became pregnant with my son, I had the same fears and doubts you must be feeling now.  While on my first visit to my OB, I told him I had a child with CF and he ask me if I wanted to do a test to find out if my baby would have CF.  I ask him what good would it do to know and he replied none unless I wanted to terminate the pregnancy.  I refused, and two days after my son was born, we had his DNA test and found out he also had CF.  Because we found out early, we were able to start  preventive maintenance therapy and now, 6 years later, he is an active child that brings joy to our life every day.  Yes, it's hard (and scary) but when I get a hug or hear him tell me he loves me much, I never regret the decision I made.  No one knows what will be waiting down the road but I would have missed out on so much love if I had listened to other people.  I wish you the best of luck and remember you aren't alone in this.  Feel free to talk, cry, cuss, or whatever anytime you feel the need.  There are alot of people that were in your shoes at one time and I'm sure any one of them would be glad to listen

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/10/2005 2:37 PM (GMT -7)   
To Deb: Oppie and Kevin's mom.

I commend you for stepping in to tell us your story. This story sounds a bit like my history. All within a years time, I lost my grandmother, then my father on Christmas Day, my aunt in jan, followed by post partum depression intensified x 2 babies. My babies became very critical and almost died before they were diagnosed with cystic fibrosis (being very short and to the point here). When they did get diagnosed, I hit the floor, I could not take another bit of bad news. Yes, it did take about 3 yrs to recover from crying every day...but, I did it!! on my own without medication. I am a very strong willed mom and it sounds as tho you are too. Ya know, it was very hard to say that with 2 babies with CF (same age, same time) and how hard it was, I felt no one could walk in my shoes and understand...but, I think you have come pretty close!. Keep up your will to move forward and stay positive. The road is hard and long, but, we can do it!!

If you care to chat by email...just give me a hollar....:-)
Kathy, mom to identical twin boys with CF (9yrs).
 
Co-Moderator, Cystic Fibrosis.

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"!!.


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/10/2005 2:42 PM (GMT -7)   
tmoss,
 
Regarding having children even when 2 parents are carriers, it is possible to not have a CF child.  When both parents are carriers, it's a 1 in 4 chance that a child will be affected with CF. 
 
My daughter, who is my first born, same father, does not have CF.  My twins do.
 
Hope this helps
Kathy, mom to identical twin boys with CF (9yrs).
 
Co-Moderator, Cystic Fibrosis.

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"!!.


Mememe
New Member


Date Joined Oct 2005
Total Posts : 1
   Posted 10/11/2005 2:53 PM (GMT -7)   
Dear TMoss
 
I am mum of an 11 year old with Cystic Fibrosis. i did not know he would have this before he was born and it was a big shock to the system. I dont know what I would of done then with no understanding of the illness but I am glad i did not have the choice because he is the best thing to happen to me. I am now a single mum and  my son is a beautiful child. He spent the first 3 weeks of his life in hospital and we have had some more hospital admissions and some tough, demanding moments,  but although he does have setbacks he has a full and worthy life.
 
I have never known such an intelligent, sensetive and muture child for their age - and I get the impression many CF sufferers are similar in intelligence - its as if they have compensatory gifts. 
 
As for what lifes like, he goes to a normal school and I manage to live an independent life- still go to work and socialise and my son has become capable of taking his own medication. Most people wouldnt know he was ill until he has to eat as when he eats he takes pancreatic enzymes to digest the food.
 
The most difficult thing about CF is living with the consistency of the illness, ie. the repetition of the preventative medicine and the fact that bad spells come back
 
You will both be carrier and will have a 1 in 4 chance of having a child with this illness and a 1 in 4 chance of the child being a carrier and a 2 in 4 chance of the child not being affected....
 
Anyway any questions you are welcome to ask bitzynicholl@ntlworld.com
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