I am currently 20 weeks pregnant and have found out the daughter I am carrying has CF. I don't have it in my family and know nothing about it. My husband had a cousin with it that passed away at the age of 6. I have talked to the CF Foundation and they have informed me the best information will come from someone dealing with it personally or with a child. I am clueless about the disease and am terrified. I know there is no cure for it and I am going crazy. Does anyone have any advise for me?
I wanted to thank everyone for their comments. Shortly after posting my message we received a call from our genetic councelor. Things went from bad to worse, as I feel. I was told at first we could poss. have her anywhere from her teens to twenties with a lung transplant. That gave me some hope that a cure could be found and our daughter could be ok. Then we received the call that we both carried the worst broken gene possible and she will have the most severe case. I was devistated to say the least. The next day, I have been told, I went into siezures. The fire department had to bring me back, as did the e.r. staff and later that night, I coded and then they had to revive me also. I have no memory of a couple days and they said that was due to the seizures, which I had never had before. After numerous testing, I was told they were stressed induced and sent home. I am just now 22 weeks along and am having a very hard time coping with things. I am at the point I know worrying will not make things change, but I have no hope at all. The baby is fine and I need to learn how to cope with this before I end up killing us both. If anyone has advise on stress management, I will be glad to take any suggestions.
Another good Mom group to try that might even have a group on that topic, is CafeMom.com They have many groups you can join, and you may be able to find others dealing with this. I hope you find the information you need, and everything works out for the best. Good luck and Best Wishes.
HI A.
My name is T. and I have a set of twins with cf and I don't care what anyone says if you keep up with the talk of everyone that has never delt with it you will go crazy. Love the day and go about your lives. you child will be happier if you are not stressed out about CF. we all live here for the day and we love for the day just smile and have a good time with her she will do wonderful. God bless you and your family we are given special children for a reason and you will do a wonderful job of raising her. You have done a wonderful job with your other children and no one gave you book to raise them. CF is what you make of it not what it make of you. lots of love and respect from a family with CF.
I think we can all relate to your fear. I am so sorry for this news. My sister had a friend who lived to be 24, she married and was very happy. God has a plan an purpose for this little one. He doesn't intend for bad . He will use your situation if you will allow Him too!!. He cares about you and this baby.
I can't help you with your request, but I did want to say I will be praying for you and your family and the health of your little one on the way.
HI A.-
My name is S., and I live in Olathe. I have two boys, Hamilton is 3 1/2 and Lyman is 21 months old with CF. First, let me say I am sorry that your daughter will have CF. While the news is devastating, let me say that my son is a huge blessing to me, and the "death sentence" I felt I received with his diagnosis is anything but. He is a happy healthy little guy and unless yu know us, people say you would never know he has CF. I am happy to chat with you sometime if you would like. It is tough to meet other families that have a CF child, as all the privacy issues keep our dr's from sharing info. about other families. You can call me at ###-###-#### or email me at ____@____.com. I would also strongly suggest that you join one of the Yahoo Groups ____@____.com or ____@____.com are worldwide chat loops with other parents in very simlar situations. It has give me tons of support. Best of luck to you!
S.
I am so sorry to hear about your baby carrying the disease. A friend of mine just found out her son may have CF and she too, is terrified. I have done some research on the disease and it is not as bad as it used to be to be diagnosed with CF. Technology has come a long way as far as treatments and medication. There are breathing treatments, excercises, and many form of medication to help your daughter.
From what I've read, you can expect your child to live a fairly long life, as long as you follow the treatment plans given to you by the doctor. If your daughter has the mild form of CF, she can live a normal life expectancy.
I know this is devastating news for you, because it has been for my friend. Your family will have to make some big changes to help your little girl. Things will be difficult and it is a long road that you face. Keep the faith and know that God only gives you what you can handle. May God be with you in this journey.
I know 2 families who have children with cystic fibrosis. One child is 10, one is 4. A great source of information and support is coming up on Saturday, May 12th in OKC at the Myriad Gardens. The event kicks off at 8am. Great Strides is the annual fundraising walk for family and friends in support of cystic fibrosis. Last year at Great Strides, I met a woman in her 30s with cystic fibrosis who was married and had children! I would highly encourage you to attend this event. There you can come into contact with families who are willing to help you. I would also encourage you to join a local chapter. If you do not live in the OKC area, there are other walks occuring throughout OK. Check out the Great Strides website at http://www.cff.org/great_strides/. Good luck and God Bless you and your family!
I don't have a child with CF but I know of a group online and that meets in person called EFECT. It stands for Encouraging Families with Exceptional Children Together. You might check out there website and yahoo group and see if you can find parents there. www.efect.org and the yahool online group is under EFECT. Good luck!!
Contact: Shelly 913.390.4824/ ____@____.com
Her dad is a Realtor with me and her 20 mo old son, Lyman, has CF, they have been raising money for the walk this weekend, I don't know her personally but I'm sure you can get lots of information from her. Lyman is a darling little boy with a huge smile, you can see more at their link: www.cff.org/Great_Strides/DougLyman
Hope this helps you. My thoughts and prayers with you.
many many prayers for you and your child as well as the others I read about today and those I know are out there.
I don't have a child afflicted with this but it's hard to see mom's worry over things
D. in Oklahoma
A., I'm in a Mom's group with Shelley and she IS a great resource for you. I would definitely contact her because she will able to answer all your questions.
J.
My cousin has CF. I believe that she is 30 or 31 now. She had to have a lung removed a few years ago. She has two kids, which doctors told her not to have, but she did anyways. The older she gets the more often she gets sick. However, treatment for this disease has come a long way, I know that my cousin was never expected to live this long but she is still here with us. CF is a recessive trait disease, which means that you and your husband are both carriers for the disease, both genes needed to have the disease are present in your child. I am probably a carrier as well considering my cousin has the disease. Hope this helps!
I don't know much about CF but I do have a special needs child and the best resource I've found are the message boards on Yahoo - just search the groups there and I'm sure you'll find other parents there.
