please help me

[anonymous]

Hi. I am 6months pregnant and a month ago they found an echogenic bowel while doing an ultrasound. After running tests they ruled out down syndrome and birth defects. My husband and I were recently tested to see if either one us were carriers of this gene and unfortunately I carry the deltaF508 gene and he carries the G542X gene. 2 weeks ago they tested my daughter's amniotic fluid for the genes and it came back positive for both genes <img src="i/expressions/face-icon-small-sad.gif" border="0"> . I am so sad for my daughter. Based on some information i've read this is a battle she will never win. But one thing's for sure I won't let this run her life. If anyone can help me with this disease I would reall y appreciate. Until now as sad as it is I knew nothing about it. So any support or information would be wonderful. please feel free to email me personally at jenniferr@qvs.com.

Thank you

 

[JohnnaMarie]

Jennifer:

I am sorry to hear that you are carrying a child with cystic fibrosis. Is there a family history of this disease or did it just catch you off guard.? So often families have no idea that these genes are in their family until they have a child with Cystic Fibrosis. You need to be proactive and learn all you can about CF. Use your knowledge you have now to your advantage. When I was born the doctors in my area did not even know what CF was. For 5 years I suffered with lots of bowel problems and my parents were about out of their minds because they did not know what was wrong with me. I was eating tons and tons of food and not gaining weight. When my brother was born he had a bowel problem that made it clear that he had Cystic Fibrosis and then they finally tested me for it and found out that I had it too. You do have an advantage in this scary situation. This is a great place to get help from people who have been through what you are going through and what you will go through. I hope and pray that your child has a mild case of this disease. I have a rather mild case of it and there are other people that have milder cases of it too.

Lots of Love and Prayers for You and Your Family

 

[JENNIFERA]

We have not been able to find this in our families. We have 3 nephews and a niece on the way that show no signs of it. But then again no one has had any reason to get tested. Based on what the genetic counselors are telling us she will have the "Classic" CF. I am still a little unsure of what that entitles but I am grateful for this website.

Thank you for the prayers.

 

[Emily65Roses]

I was the first in my family with CF too. And I'm still the only. It happens a lot. And promising not to let CF run your child's life is excellent. Many parents come here talking about how they don't let their kids do anything outside of the house for fear they'll get sicker. My simple point is as follows: What's the point of getting more time on earth if that time is spent living in a box?? At the same time, you'll have to make sure she's religious about her treatments. Almost every one of us goes through a time in our teens/20s where we test the limits, so to speak. We are sick of being different, we don't want to have to worry about meds, etc etc. You kind of have to let that time pass by. I went through it too. But overall, she has to be good about getting her meds and treatments done. And that starts with you. If you teach her to be good about them, she will carry on in the same manner, more than likely. It's hard to find a balance. But you need to make sure she takes care of herself... without depriving her of a "normal" life, without locking her in a closet. I know that's all more information than you may need right now, but it just kind of came out. Haha. Either way, it's a good piece of advice. You have to find a middleground for her and you after she's born. Somewhere between too lenient, and too restrictive. That's always been very important to me. I take care of myself, but I still go to public schools, and socialize with other kids, and participate in public activities. One thing I like to stress as very important to new parents is finding that line. Many parents have a CF child and immediately go into overprotective mode. Not that I can say I blame them. But the parents that continue in that mode after the initial paranoia has worn off, need a wake-up call. Every parent will have an initial overprotective paranoid way of doing things. But after you get into the swings of things, that has to lighten up. CF kids already have a shorter life, a life compromised with meds and treatments and hospitals. They should be allowed to live as normal a life as possible, after all that stuff.

Mind you, this isn't an attack on anyone. And Jennifer, I don't assume that you would be this way. I just wished to share this POV knowing that you're going to be the new parent of a CFer. I can't imagine how hard that must be. I'm a CFer, but not yet a parent, and certainly not the parent of a special needs child. So I figured the best we can do, at least, is give you opinions and points of view from our experience that we deem important. This is one of mine. <img src="i/expressions/rose.gif" border="0">

 

[JENNIFERA]

Everything you have said has been wonderful. I need to know all of this information. I would rather get this from someone like you who lives with it then say a parent of a child that has CF. I would never keep her from anything except something that would put her health at risk. All of our family that will be around her often has already agreed to a flu shot and my husband and I have already had one. I want her to live the most normal life she can and I will do everything I can for her so it's possible.

Thanks again <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Emily65Roses]

Always happy if I can be of help. <img src="i/expressions/face-icon-small-wink.gif" border="0"> <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Sorry to hear about the diagnosis. I am 33 years old with CF and was diagnosed when I was 2. I have had a full life and thanks to my parents they have taught me well, in terms of taking care of myself. Treat the meds, treatments etc. like it is a game, make it fun for your child. DO NOT let your child skip any treatments etc EVER. My parents instilled in me from the beginning that it was not an option to skip anything and even to this day, I can probably count on one hand the times I skipped(okay I was not perfect). Treat the meds and treatments like it is just something you gotta do, like brushing your teeth. Also, do not treat the child like he/she should get special treatment or get away with anything, keep it as normal as possible. Also, let the child be really active, physical activity no matter how little, is EXCELLENT for keeping the lungs clear and the mucus out! To this day I exercise 5-6 times a week. Encourage the child to cough and it is okay to cough because that gets all the mucus up and out. Be proactive with the childs care, do not wait for infections to grow worse, nip in the bud so no scarring will occur in the lungs. I am 33 years old and proud of it! I am married for almost 8 years now and have a step son. Decided to not have children. Life has been tough, but that which not kills us makes us stronger!!! People with CF and other diseases have such a strong will to survive!!!! Install POSITIVE attitudes and when its bad just treat it like a bump in the road that shall soon pass.

Good Luck and if you want to talk off line, let me know and I can email you!

Jennifer
33yrs old with CF