I must say, I am completely in shock still. You know the drill - hating God, and the rest of the world, for letting this happen to my family.My sane side is ready to find out as much as possible about CF. What should we expect? She is one month old and I haven't even met her yet - I am living in another state from my brother. As far as I know, she has not shown any symptoms, she had the test soon after birth and my brother found out yesterday from a doctor. Are we better off knowing early? Can we do more to stop the onset of chest infections etc? She is still being breastfed - should this continue? Are there any websites out there that you recommend?So many questions, sorry! My fiance and I are looking to start a family next year after our wedding - what should we do? I can only assume I have the gene to cause CF - do I get tested anyway and ensure my partner does as well. What if we are both carrier's - what other options do we have to conceive a healthy child?Thank you in advance for your understanding and information.Cathy
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I just found out my niece has CF
- Thread starter anonymous
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What a great Aunt you are trying to find out info ans such. Even from far away you will be a great support person if you are educated. I Your family is MUCH better off knowing early. Now you can gather and go through info about CF before the baby gets "sick" I wish we had known so early about our daughter's CF. I don't know how much can actually be done to ward off infections aside from some basic things (that they will show the beby's parents) but at least they will know that if the baby seems to be getting sick not to just assume that it is a cold and let it go.Breast feeding is great for babies with CF. They may need to suppliment the breast milk with something else though depending on if the baby gains sufficient weight. But the mom can pass imunities on to the baby with breast milk.This site is good but not very active. A more active site is http://groups.yahoo.com/group/cfparents And yes this would be good for you too. We have lots of concerned family members on that list.Talk to your OB/GYN about genetic testing and genetic counseling. Some docs prefer to test the person who is related to someone with CF first to see if he/she is a carrier and then test their spouse only if the relative's test comes back positive, others do it the opposite way and only test the relative if the spouse is a carrier. I don't think it makes a difference as long as you get tested.If you are both carriers then there is a method if invitro that they use to ensure a healthy child. The problem is, with like anyother invitro procedure, pregnancy does not always occur. Good luck to you and feel free to visit our family site at http://groups.msn.com/TeamRachelJaneAndrea
PLEASE,PLEASE,PLEASE, START FUNDRAISING MONIES FOR RESEARCH. HELP ERADICATE THIS DISEASE. THERE ARE A TON OF WAYS TO RAISE MONEY IN YOUR COMMUNITY. I KNOW ILOST A CHILD TO CF AND THAT HAS BEEN MY WAY OF COPING NOW FOR 24 YEARS. GOD BLESS.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Cathy, Since you have a relative that had CF, and you are not sure you are a carrier, the best thing to do is have your fiancee tested for the CF gene. The testing is not cheap and if he is not a carrier, then you don't need to be tested to see if you are. Both parents need to carry the gene to have a CF child so if one of you is not a carrier, your children will not have CF. I had this situation come up in my family as well and it only makes sense to get the least likely person tested and then go from there.Good luckJoanne Schumtwoluckylungs@juno.comluckylungsforjo@aol.com
Cathy,I have a son with Cystic Fibrosis. He is now 14 years old and doing very well. The words that come to mind are........never let "CF" be your familys life, it should always be a "part" of your life, but do not ever let "CF" be the thing that controls her life. When my son was diagnosed a young lady who had "CF" told me to treat him "normal". Give him chores to do , as you would your other children......and I have always followed her advise. Please dont misunderstand.....we do all his treatments, he takes his medication, and we go to all of our doctor appts, but when the treatment is done, the medication is taken and the dr visit is over.....we go on with our life. God Bless
I really hope somebody can help me out here, my 14 month old son has an alergy to dairy products and my doctor has just asked for him to go for tests which are a sweat test and a camera to be put into his stomach, he said he was being tested for celiacs disese and also cystic fibrosis, reading these posts has given me hope because nobody in my family or my partners family has cystic fibrosis so does this mean he cant have it? please help as im going out of my mind with worry many thanks.