Confused!!!!!!!!

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anonymous

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello, I am new to the forum. I am a mother of a 4 yr old who has CF. It is so heart breaking at times. We are so blessed to have her.She helps us cherish the things in life we use to take for granted.My husband and I want to have another child to grow up with our little girl.She crys for a little brother or sister all the time but we are so scared to have another child.We are afraid if it was to have cf too that they would make each other sick and that it would be to emotionally hard on us.We have made our selfs crazy with what is the best thing to do.Is there anyone who goes through this too?Is there anyone who has grown up with another sibling that has had cf too? Can someone please give some advice. Thank-you God Bless
Heather mother of 4 yr w/cf
 
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anonymous

New member
If it helps you at all with your decision. I am 43 pwcf, and I am the 11th child in my family. I think if anything coming from a bigger family helped me with my cf. Don't be afraid.
 
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anonymous

New member
Hi Heather,
My name is also Heather and I also have a 4 yr old with CF. My husband and I struggled with this decision as well...only because I would have liked another and he didn't want to take the chance. In the end we decided not to have any more children because it was the best decision for our family.
There are many reasons that people choose to have (or not have) another child after a CF diagnosis. There have been many debates on this site as well. I feel that we have made the best decision for our family. I know two other couples that were faced with the same decision and are happy to have made the decision to have another child....one family had another cf child and the other a non-cf child.
A lot of people on this forum will have opinions about what you need to do but only you will know what is right for your family. I'm of the thought that if you are not 100% sure about your decision then perhaps that is your answer.

Heather
 
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anonymous

New member
Thank-you all for all your comments,It really helps to hear from people who knows what we go through everday in our lifes.We don't have friends that can really relate to us when it comes to CF.Thanks again
Heather
 
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anonymous

New member
Heather,
My parents had 5 children & the oldest & youngest (me) had/have CF. I can tell you that my sister & I had totally different cases of CF. She had it pretty bad & I had it bad early on, as a baby, then I had a break until just recently (I'm 38 now). I did catch staph from her, but back then, we slept in mist tents & I would crawl in w/ her & that's how I got staph, we were breathing the same air. It was also hard for me to watch her suffer & eventually pass. It had a profound effect on me, as I knew what my future may hold. Just food for thought...
God just gave my parents the strength to handle it all as He would you as well.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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poohbear424

New member
hey heather
i am a 23 year old female with cf. i am the youngest of 5 and 3 of us had/have cf. i lost my sister when i was 9 yrs old she was 18 but that was back in 1990 alot of things have changed since than, like medicines and life expectancy, etc... i know they say with siblings living in the same house they can get each other sick but myself and my brother still live with my mom and we dont seem to get each other sick and we have totally different cases. he is really healthy thank god and my health is on a roller coaster from time to time because of a bacteria that i grew on the right lung that comes and goes when it wants to. if you would like to talk more let me know!
 
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anonymous

New member
Dear anonymous,

This subject about having kids has been on these boards before and it is a very touchy subject with a lot of people including myself. I have CF and my identical twin brother has CF, and I will admit that having someone close to me who knows what I am going through has definitely helped. Your situation is different, you have one child already with CF and you want to have another child. You and your husband are carriers there is a 1 in 4 chance that your next will have CF to. If I was in your situation and knew that both my spouse and I were carriers and passed this disease on to another child I would not be able to forgive myself.

But that's just me.


I remeber reading a post last year about a woman who had 5 kids, 4 of them had CF, 3 of them had passed.

Dave 29 w/cf
 
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kybert

New member
why not adopt if you dont want to run the risk of having another child with cf? or get the feotus tested as suggested. my older brother caught mrsa from hospital when he was young and spread it round the whole family. although it didnt affect my health [he died at age 14] it just goes to show how if one family member catches something the rest get it too. having siblings isnt the be all and end all. i know heaps of only child people and they havent suffered in any way shape or form. my partner is an only child and he says hed hate to have siblings after coming across my family lol <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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tiffanystar

New member
I have a brother whose has cf and so do i. its not that hard to live with all you do is tell them to cover up their mouths when they cough and wash their hands.
 
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Shayla

New member
I am the youngest of six children, four of which have CF. It was really hard growing up, especially on my parents. Not a day went by that they didn't worry. But I don't know what I would have done without my siblings. Especially without those that have CF also. It was so good to have someone to talk to that had been through the same thing. I generally always had one of them as a roommate in the hospital. Sometimes all four of us were in at the same time and we would drive the nurses crazy running between each others rooms. We did share germs, when one of us got diagnosed with pseudomonas we all ended up with it. But I wouldn't trade those days for anything. I also know of cases where someone had cepacia and there sibling never has gotten it from them. So I think it can go either way. I wish you tons of luck in you decision.

--Ann 25 w/cf
 
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anonymous

New member
Kylie,
I also have MRSA. Is it possible that I could give it to my husband & daughter, both w/o CF? I guess I thought if they had a normal immune system that there wasn't such a risk. Maybe I need to be more careful around them.
Lynda
 
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AbsintheSorrow

New member
I have MRSA as well. Got it at 16. I think if they are both healthy individuals, I think the risk of giving them MRSA is far less for two reasons. One, they're less likely to get it, because their immune systems are better equipped to deal than yours or mine. And two, if they do get it, it won't harm them in the same way it does me and you. I may be wrong here, and if anyone knows so, please speak up. These are just my assumptions.
 
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kybert

New member
yes its possible. but as emily said it didnt pose a risk to them, unless they had some kind of unexpected surgery or accident. its also much easier for them to get rid of it too. i recently gave my partner regular staph but its all cleared now. you can always get your husband and daughter tested just to see but it wouldnt achieve anything because mrsa is almost impossible to get rid of in older cf patients.
 
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arabeth

Guest
Hi Heather,

I wish you the best in making this very difficult decision. Everyone here has made very good points and I hope you take both sides into careful consideration and do what's best for your family. As a mother of 5 children, 2 with CF and 3 without, I can tell you that not a day goes by that I don't worry about all of my children, not just the ones with CF. If it's not CF it's something else. Yes, there are more things to be concerned about and it takes more work with the CF kids but you'll worry either way. That's what parents do. Also I can honestly say I think my daughters would have a much harder time dealing with CF if only one of them had it. At least with both of them they have someone to relate to. By no means am I saying you should have a child with CF just so one doesn't have to suffer alone, but if you end up with 2 children with CF it's not the end of the world. There are certainly benefits to them having someone to relate to and someone to fight for. It's always harder to go thru something alone when you feel like no one understands. Having a sister who is looking to her for guidance gives my older daugher more motivation to take better care of herself. She is setting an example for her younger sister. When I was pregnant with my youngest daughter and found out she had CF the doctor called me and offered me the option of abortion. That was never an option for me and I never considered it but I look at her now and I think to myself that I could never forgive myself if I HADN'T had her. Again, best of luck to you. And remember, there is still a chance (a 75% chance) of having a child without CF... And there's adoption if you decide not to risk it. Best of luck whatever you decide.
 
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anonymous

New member
Hi I don't want to barge in on the original poster, but we are having the exact same issue and really haven't decided whether or not to have another child. We have one without and the younger with CF. And we actually want another now more than ever since we've had the diagnosis on our son. Renee thank you for your honesty and I agree that I can't imagine life without our son. With or without CF he has given us the gift of love every single day. I appreciate more by having him. He has touched so many people just by existing. We are blessed.

mommy of two beautiful kids
 
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anonymous

New member
Another option is Invitro using PGD, preimplanation genetic diagnosis. It is very expensive and most insurance does not cover it, but, if you get pregnant, you are guarenteed a child without CF. My husband and I checked into this, but because of the cost, we decided to try the old fashion way and luckily became pregnant with a beautiful baby girl who is only a carier. It was a very difficult decision, and we knew we were taking a risk. Best of luck in whatever you decide to do!
 
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anonymous

New member
Cost is between $10,000 - $13,000. I don't know what the odds are of getting pregnant, but the odds of having a CF child are 0.
 
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