<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bedazzled</b></i>
Hello,
I am new here. Actually I am new to all aspects of CF, and learning about it. My daughter in law is expecting a little boy in Sept.
I guess it is a standard test procedure now to screen for CF during pregnancy, and she is a carrier. They just found out my son is also a carrier. I know that this means there is a 25% chance that my grandson will have CF. But another worry is the sonogram shows he will be born with a clubbed foot, and there is some sort of sac, or cyst in his abdomen. I guess these are sure signs that he will have CF.
I think right now I am here to vent my fears. But I would also appreciate any info. Is he going to be born in distress? What (besides clubbing) are other disabilities he could have? They declined an amnio because of the risks, but I need to know what to prepare for. I am also new at being a grandma, so this is breaking my heart. I thank God that he will be diagnosed quickly so treatment can begin as soon as he's born, but does this really affect any outcome? Will he be able to be involved in any physical activities?
I'm sorry, I know that a lot of these questions can not be answered now. Please have patience with me. I am thankful for all of the wisdom I will learn from you all, and these pages. It's going to be a long four months ahead for us, and I'm just starting out so I may be helpful and educated when our little gift is born.
Thank you, may God bless, and be with you all.
Tina
My email: bedazzled@neo.rr.com</end quote></div>
Well first of all Congrats on the new grandbaby on the way. OK now down to business. A clubbed foot is much different then the clubbed fingers & toes a CFer gets as CF progresses. I am pretty sure there is no connection to CF in that aspect. The cyst in the abdomen could very well be meconeum ileum which is problems with the stool & intestines.....often the first indicator when a baby is dx with CF, but not always. If your grandson is to have CF learning now is the best because treatments & preventive care can begin at birth. The idea is to slow down the progression & maintain things as long as possible. Since I doubt the club foot is directly related to CF any additional thoughts are based on the outcome of treatment for his foot. It has been proven that exercise helps a CFer tremendously. QUite often exercise will condition the body enough to compensate for what the lungs themselves cant do on their own anymore. Of course as it progresses other treatments like nebs & other meds need to be included. His limitations (as a rule because it does vary) will only be set by the mind frame of him and his family. IF he is taught that he cant or shouldnt then he will never try. Just because he could have or does have CF should not prevent him from doing things. He might have to do it in a different fasion or with a stricter schedule to accomodate for his healthcare, but otherwise let him strive........ One of the biggest problems with CF is that there is no crystal ball to forsee the future of each CFer. Everyone is different. Even siblings with the same mutations & enviroment can have much different experiences. Compliance, environment, lifestyle, attitude and luck all play a part. I think its great that you are trying to prepare yourself as much as possible, but please remember that a dx still needs to be confirmed. One thing I will mention because many of us older CFers parents didnt think of it. Life insurance and health insurance become issues for us. IF its possible to get a life insurance &/or health & disability on him before a positive CF dx is made it would be a great help. Especially the life. Even if the paperwork is submitted, but the policy isnt received yet. I am not sure what else to say now so as you have more questions please feel free to ask!!!!!!!! HUGS!
