Hello there,
Sorry for the long thread. I was going to give you a quick testimonial but it turned into something bigger I guess I wanted to share with you. My wife and I have a 17 year old young man with CF DDF508 mutation. We discovered his CF at age of 4 months. I have been where you are before but more without the knowing. My son has a younger brother that is 14 months younger, we were offered the Amniocentesis with him but declined. We were determined to take on anything whether ill or healthy. My wife and I both decided after our last son was born that a tubal ligation was definitely in order as we didn’t want to take another risk. I am pleased to say that my youngest who is 16 now does not have CF. We tested him at 2 months old.
My son Allan’s daily routine: He does 2 sets of breathing treatments daily. He does Albuterol and Plumozyme nebulized twice daily. He takes 4 pills of Zenpep (Pancreatic enzyme) to help him digest his food, 3 with snacks. We had a G-tube put into his stomach at age of 9 years old as he was not gaining weight. He also wears a Vest that he uses twice daily for about 20 minutes at a time to help with airway clearance. He started actually swallowing the enzyme capsules around age 4, which was a blessing because it was a bit of a hassle trying to put the capsule tiny beads in food, which sometimes he did not eat all of it. Heck he was able to swallow sometimes 7 pills at once, 4 enzymes and the rest vitamins etc. just to show off
Now with all of that said, most parents immediate response is “Oh I am so sorry your son has to do all of that”, or “Oh I am so sorry for you” my response is “Why?” but I say it kindly. My son can eat just like anyone else; he just needs extra calories at night. Heck there is some nights he doesn’t do feedings sometimes for days at a time. He had a perfectly normal childhood growing up. The only hiccup was once in middle school where we asked the coach to allow him to change his gym clothes in another room and we explained our situation with the G-button. The coach agreed that some kids do tease a lot (unfortunately this is the world we live in) so my son did feel a little self conscious about it, but otherwise he still went to water parks and pools etc. Also the biggest hiccup was in high school. The teachers in 10[SUP]th[/SUP] grade were non supportive sadly with my son’s condition. They refused to allow him to go to the restroom and he coughed a lot the first 3 periods. This caused a big disruption in the class and he was put in the hall almost daily and the teachers would forget about him. Needless to say I was pretty mad at the whole affair but in the end, it would do no good to sue the school or force the teachers hand when my own son just wanted to do home schooling. So that’s what we did, he does modules at home and my wife and I both work jobs. When he has problems we help him out at night. He will graduate this year and we will see what the next step in life is.
Just remember, just because your child may or may not have CF it’s not a death sentence anymore. It does not put him in a category where it shortens his life span to under 40 anymore. They have made extreme progress and there are new medications coming out as mentioned above called Kalydeco. This new drug is one of the biggest and greatest news we could hope for. So coming from a dad I can tell you that you are making the right decision with keeping your child regardless of the results of the Amniocentesis. I do not know what my household would be like without my son Allan. He brings so much joy and hope to everyone around him. He is passionate about a lot of things and he is one of my best friends. Ok I am stopping now, tearing up.
EDIT: One small edit that I wanted to share. I am praying for you that your son/daughter does not have this disease, but if your child does, you are not alone. Don't feel like you are always going to have to do everything yourself. I use to feel that way, like I had all of this weight on my shoulders and a heavy heart. But once again my son is 17 now. He has been preparing his medications with the nebulizers since he was 8 years old. He takes his meds by himself, he does his nebs, he does his vest, he prepares his tube feedings at night, everything all on his own. I do have to encourage him every now and then, more like a nudge to get him to do some things. One last thing is, don't ever feel like you can't ask for help. My wife and I were both proud people (still are to some degree) but we always felt like we had to do this on our own. My brothers and sisters had no idea what our life was like until I shared it with them. Then I felt stupid because they could have helped at the beginning giving my wife and I a break every now and then. Hang in there, you will get through this. God never gives us more than we can bear.
