I'm going to answer you questions in caps, so please don't feel that I am "yelling" by using the caps.
hope we don't upset everyone, but we are scared to death of our daughter becoming pregnant by her fiance' who has a family history of CF. His brother died last year at age 20 from CF, and has a second brother 22 that also has CF. According to the fiance', he doesn't know if he has CF which strikes us as extremely insane to not know particuarly since both of his brothers are CF positive and one already died young (please feel free to comment on that "I don't know if I've got it" position of the fiance').
MY HUSBAND'S BROTHER DIDN'T FIND OUT IF HE WAS A CARRIER OR NOT UNTIL AFTER HIS GIRLFRIEND WAS PREGNANT WITH THEIR SON. YOU ARE RIGHT, THIS ISN'T THE BEST WAY TO GO ON HIS PART BUT THE REALITY OF THE SUITUATION IS YOU CAN'T EVER CONTROL OTHERS BUT RATHER GUIDE THEM IN THE RIGHT DIRECTION.
We don't know much of anything about this (we're ignorant of all the facts about CF) other than it appears that based on what we've read so far, that reproducing may be hazardous to the extreme for their offspring.
BOTH PARTNERS MUST BE CARRIERS OF THE CF GENE TO PASS IT ON TO THEIR HCILD. I WOULD HIGHLY RECOMMEND THAT YOUR DAUGHTER AND HER FIANCE GET TESTED. IF HER FIANCE'S BROTHERS HAD THE SAME MOM AND DAD, HIS MUTATIONS WILL BE THE SAME AS THEIRS (1 OF THEIR 2 MUTATIONS) IF HE IS A CARRIER. TO BE SAFE, YOUR DAUGHTER SHOULD HAVE AN EXPANDED MUTATION TEST DONE BY QUEST DIAGNOSTICS SIMPLY BECAUSE HE HAS A FAMILY HISTORY OF CF.
Are we nuts? Over reacting? Or should we be afraid and suggest testing of our both and if positive for CF, pay for sterilization?
NO YOU AREN'T NUTS NOR ARE YOU OVERREACTING, IF BOTH TEST POSITIVE FOR CF CARRIERS THERE ARE A FEW THINGS THAT CAN BE DONE. IF THEY DO WANT CHILDREN, IN-VITRO FERTILIZATION WITH PRE-GENETIC IMPLANTATION DIAGNOSIS IS AN OPTION. STERILIZATION IS ALSO ALWAYS AN OPTION, BUT A TAD EXTREME IF THEY EVER WANT CHILDREN.
Name withheld so as not to be ID'd by relatives of the other family.
IF YOU HAVE MORE QUESTIONS AND STILL WANT TO REMAIN ANNON. PLEASE FEEL FREE TO EMAIL ME, division902@hotmail.com ANY TIME WITH QUESTIONS,CONCERNS. I AM HAPPY TO HELP OUT.
Thanx for the responses. Admittedly, we're not terribly fond of the guy but not because of CF. CF only came to light when his brother passed away. It was then that we found out about the family history which was not the best way to learn of it (imho). He has not been tested for carrying CF. Being the over-protective (lol) parents/in-laws we have found genetic screening md to accomplish.
CLEARLY THERE ARE SOME UNDERLYING ISSUES THAT SHOULD BE ADDRESSED TO YOUR DAUGHTER INITIALLY, AND PRIVATELY. ONLY AT A LATER DATE SHOULD YOU SPEAK TO BOTH OF THEM SO THEY DON'T FEEL ATTACKED. DISCUSS IT WITH HER FIRST, GIVE YOUR DAUGHTER A CHANCE TO EXPLAIN HER POSITION. MAYBE THEY'VE ALREADY TALKED ABOUT IT. MAYBE SHE IS VERY UNEDUCATED ABOUT CF AND NEEDS A VISIT TO THIS SITE....
Any suggestions on how to nudge them into genetic testing (other that the obvious ones to us)?
TALK TO THEM, SHOW THEM THE FACTS, EXPLAIN THE PROBABILITIES OF THEM ENDING UP WITH A CHILD WITH CF, THE COMPLICATIONS AND COSTS ASSOCIATED WITH CF CARE (FEEL FREE TO GUIDE THEM TO THIS SITE SO THEY CAN ASK QUESTIONS FOR THEMSELVES).
Fiance' is kind of a free loader / medically uninsured meaning we'll end up paying for his roulette wheel approach if their child has CF - along with extreme heartache and the potential that we as grandparents may, by design and their choice, outlive our grandchildren. That SUCKS!
SOUNDS LIKE YOU NEED A SERIOUS HEART TO HEART WITH YOUR DAUGHTER. MAKE IT ABOUT HER WELL BEING, HER FUTURE, HER FINANCIAL STABILITY AND YOUR CONCERNS FOR HER. DON'T MAKE IT ABOUT WHAT SHE ISN'T DOING RIGHT AND SO ON. I'M NOT TRYING TO BE JUDGEMENTAL OR ASSUME THIS IS THE WAY YOU WILL APPROACH IT, BUT FROM MANY POINTLESS CONVERSATIONS WITH MY MOTHER WHICH BEGAN IN THIS MANNER.... THEY NEVER GOT ANY OF US ANYWHERE!
We don't want to make our daughter hate us, but honestly feel like we have a real problem with a lackadasial approach to this situation (which they both have). Since this is definitely all new to us, how should we nudge them into genetic testing? Our daughter has a trust account with significant $$$'s in it and we were considering threatening to stop applying annual deposits unless they are both tested, and if carriers, that fiance' be sterilized. If indeed they are both carriers, we do not consider a 25% chance of CF acceptable odds (sorry, that's truly how we feel).
THE WHOLE THING IS A VERY SENSITIVE SUBJECT TO EVEN THE MOST LEVELHEADED OF PEOPLE, AND IT DOESN'T SOUND LIKE THE FIANCE IS SUCH. MONEY IS NEVER A WAY TO "HOLD A PERSON HOSTAGE" BUT OFFER A COMPRIMISE AND MAKE SURE YOU EXPLAIN YOUR CONCERNS FOR THE SITUATION. AS I MENTIONED ABOVE, GUIDE THEM TO THIS SITE, BUY THEM A BOOK ON CF, ASK YOUR DAUGHTER TO TALK TO HER FIANCES PARENTS ABOUT THEIR SONS DEATH AND THE PAIN OF THAT (I.E. IF SHE ISN'T CAUTIOUS/DETERMINES HER AND HIS CARRIER STATUS THEY MAY BE IN THE SAME SITUATION SOMEDAY). I DO THINK IT'S REASONABLE TO STOP APPLYING ANNUAL DEPOSITS UNLESS THEY GET TESTED. THE STERILIZATION THING THOUGH.... MAYBE A BIT FAR. THERE IS ALWAYS AN IUD THAT IS ON OF THE ABSOLUTE MOST EFFECTIVE BIRTH CONTROL METHODS. IF THEY ARE BOTH CARIERS AND BY THE GRACE OF GOD (OR WHATEVER YOU BELIEVE IN) THEY DECIDE TO GO AHEAD WITH STERILIZATION, AT LEAST HAVE HER FIANCEE CYROPRESERVE AN AMPLE AMOUNT OF HIS SPERM. THAT WAY IN THE FUTURE, IF/WHEN THEY WANT BABIES, THEY CAN DO IVF WITH PGD AND AVOID CF ALL TOGETHER.
PLEASE FEEL FREE TO ASK MORE QUESTIONS AS YOU NEED TO, AND ALSO, PLEASE FEEL FREE TO EMAIL ME IF YOU WISH TO DO SO, division902@hotmail.com
