Cystic Fibrosis

Does anyone have any experience with this disease? My next door neighbors just had their first child-a son. They (and we) eagerly awaited the birth of their first child. They did not find out the sex. They were so excited, happy and ready. I went over with a casserole last week to congratulate them on the birth because I knew they were induced three days prior. I couldn't wait to see the baby and find out if it was a girl or boy. They greeted us, and told us that it was a boy, but that he was in the NICU with some sort of belly problems. He had a large belly and a blockage was suspected. He had mucus in his stools and they were running tests. They thought he had meconium plugs, something I have never heard of before. They were also told that they were going to test for Cystic Fibrosis. Anyhow, I was so happy on Saturday when they came to bring the casserole dish back, baby in hand. He was so cute! I asked them about the tests and how they came out, expecting good news. Unfortunately, he has CF. They are dumbfounded, shocked and sad; as are we! I feel so bad for them! They now have a 25% of all future children having CF and their son has a hard, short road ahead.

I lived in a neighborhood when I was about 12 or so for a few years. One of the kids that played with us regularly was a year or two older than me. He had CF. I remember his bedroom, because I was friends with his sister also. He had oxygen tent, med supplies and all sorts of stuff. He had to have his back pounded on several times per day. He was very, very skinny and coughed a lot, then would lean over and have mucus that he coughed up, coming out of his mouth. I always felt so bad for him. He died in his early 20's.

They are in good hands at the Mayo Clinic, but there is only so much that can be done. I have tried to do some research and basically it says usually by 30 it is fatal most often due to lung infections. They have found the gene that caused this and are doing research to see if they can do gene therapy to repair the genes that block proteines and fats and cause the mucus to be thick and block absorption of key vitamins, etc, etc...I have tried to understand it, so I can understand what they are going through. I just feel so bad for them and I'm not sure what to say. I don't know if I should ignore that he has CF, or bring it up and say I'm sorry (which I did say when they told me), or wait until they bring it up and just listen but not say anything until they do?

What I would like to know if anyone here has recent or current experience with CF? A relative, neighbor, friend, etc...and can you tell me about them? Their life, treatments and the challenges they have had? I want to help as much as I can, and understand.

[2ndBaby]

Wow-I really feel badly for them.  What shocking news to hear at what should be a happy time.  I don't know a lot about it...I babysat a little girl with CF when I was in middle school.  I just remember I had to feed her applesauce with an enzyme medication mixed in.  I had a friend in college with CF.  One of the tell-tale signs were her clubbed finger tips.  She led as normal of a life as possible.  Even knowing her life expectancy would be short, she still earned her college degree and married, just like every other young person her age was doing.  She passed away at age 28, I believe.  I think that is key-trying to live as normal of a life as possible.  I would say to you that the best thing you can do for them is to celebrate their baby as you would any other 'normal' baby.  They need that.

[jenstam]

I agree. They say to allow them to lead as normal of a life as possible. It is just so sad ):

Thank you for your input!

[keekey]

I just literally lose my breath when I hear these stories.  

Sounds like you are a really good neighbor.  Maybe you could just simply tell her that
you will be there to help them if they ever need it, that you cant
be in their shoes, but you know the heartbreak of worrying about your babies
and you would like to help if there is anytime that you can, and just leave it at that.
Sometimes people dont realize how much others care, I think you are a
good person for researching and taking the time to care when you have a lot on  your plate.

[kellym]

My sons levels came back elevated in his PKU tests for CF. We went through hoops and genetic councelling and everything. Come to find he is just a carrier. I'm wondering though, did they say for SURE he had it?  It is very, very sad :( I know the heartbreak. I feel like I lived it for a couple of weeks. We had to wait until Blake was 1 month so that they could give him a sweat test which is the only definitive way to test. They wanted to make sure he had enough sweat that's why they had to wait until he was one month old. They must have done a DNA test and came up with 2 different mutations. One from each parent. Both parents MUST be a carrier to have a child with CF. Yes, it is a terrible disease and I am so very sorry for them :(

[jenstam]

I'm not sure what tests they have done, but she said he had it. I think the meconium plugs and the mucus were what made them test early. Anyhow, thanks for the info. I bet that was really scary for you!

[kellym]

Oh, I am just heart broken for them. Yes, they usually have a problem with the first bm and their stools are supposed to be greasy. Ugh, my son had none of that but, I'm not going to go into my whole saga. I just had done a TON of research on the topic and learned alot.  My prayers will be with them.

[jenstam]

Thanks! It is a hard road ahead for them and their son.