To have more children (with possible CF) or not

[LouLou]

I'm a 28 year old female with cf who is doing very well. My mom quite her career and made me her full time job. I will forever be indebted to her and appreciative. They did not have any children after my diagnosis. I feel that I wouldn't have been happy with their decision to have additional children had they chosen that route. I love my older brother but I love life more. He does not have cf.

The medical community is just at the beginnings of figuring out cross contamination. If your next child had cf they would expose eachother to dangerous germs...many of which might not even be known about yet.

Ponder this example I heard recently from a friend that works at CHOP (Children's Hosp. of Philadelphia). I hope the parents of this teen aren't on this site to read this but if they are I'm so so sorry you are having to deal not only with cf but also of protecting one child from the other. No one should ever have to endure this type of pain.

A teen is repeatedly admitted to CHOP because his lungs were rapidly declining from a cepacia infection. He was on the mend but it was clear to CHOP workers that the family really wanted him to stay at the hospital as much as possible because at home was another cf child who did not colonize this vicious form of cepacia. I never heard the end of the story but I think it's so sad that (s)he may have died in this 'unwanted' state. And how horrible the parents must feel. And the other child...what guilt to live with. Thinking about this makes me want to vomit.

I hope you make a decision that you will never regret. Good luck!

 

[LouLou]

I'm a 28 year old female with cf who is doing very well. My mom quite her career and made me her full time job. I will forever be indebted to her and appreciative. They did not have any children after my diagnosis. I feel that I wouldn't have been happy with their decision to have additional children had they chosen that route. I love my older brother but I love life more. He does not have cf.

The medical community is just at the beginnings of figuring out cross contamination. If your next child had cf they would expose eachother to dangerous germs...many of which might not even be known about yet.

Ponder this example I heard recently from a friend that works at CHOP (Children's Hosp. of Philadelphia). I hope the parents of this teen aren't on this site to read this but if they are I'm so so sorry you are having to deal not only with cf but also of protecting one child from the other. No one should ever have to endure this type of pain.

A teen is repeatedly admitted to CHOP because his lungs were rapidly declining from a cepacia infection. He was on the mend but it was clear to CHOP workers that the family really wanted him to stay at the hospital as much as possible because at home was another cf child who did not colonize this vicious form of cepacia. I never heard the end of the story but I think it's so sad that (s)he may have died in this 'unwanted' state. And how horrible the parents must feel. And the other child...what guilt to live with. Thinking about this makes me want to vomit.

I hope you make a decision that you will never regret. Good luck!

 

[NoExcuses]

Talk to someone with end stage CF. That would be my advice.

And many parents of young people think their kids have a mild form of CF. Respectfully, having a young CFer gives you 0 perspective on what this disease can bring.

And because your kid is mild now, doesn't mean he/she will be in the future.

And CF mutations aren't the end all be all of CF clinical outcome. If you think just because your kid doesn't have DeltaF 508 that he/she can't have issues with CF, I suggest you do more research.

I realize that denial is a great defense mechanism, but having a healthy sense of what CF is and what it can do (it seems like every parent I run across with a CF kid thinks they're some magical CF exception and CF won't turn out to be all that bad) is important

 

[NoExcuses]

Talk to someone with end stage CF. That would be my advice.

And many parents of young people think their kids have a mild form of CF. Respectfully, having a young CFer gives you 0 perspective on what this disease can bring.

And because your kid is mild now, doesn't mean he/she will be in the future.

And CF mutations aren't the end all be all of CF clinical outcome. If you think just because your kid doesn't have DeltaF 508 that he/she can't have issues with CF, I suggest you do more research.

I realize that denial is a great defense mechanism, but having a healthy sense of what CF is and what it can do (it seems like every parent I run across with a CF kid thinks they're some magical CF exception and CF won't turn out to be all that bad) is important

 

[NoExcuses]

Talk to someone with end stage CF. That would be my advice.

And many parents of young people think their kids have a mild form of CF. Respectfully, having a young CFer gives you 0 perspective on what this disease can bring.

And because your kid is mild now, doesn't mean he/she will be in the future.

And CF mutations aren't the end all be all of CF clinical outcome. If you think just because your kid doesn't have DeltaF 508 that he/she can't have issues with CF, I suggest you do more research.

I realize that denial is a great defense mechanism, but having a healthy sense of what CF is and what it can do (it seems like every parent I run across with a CF kid thinks they're some magical CF exception and CF won't turn out to be all that bad) is important

 

[Mandy]

I know that you have had a flood of responses to your question and are probably sick of everybody's advice but I just wanted you to know that it makes me sick to hear people say you should not have more children because there is a risk the child might have CF. It literally hurts me to hear them say that because I am the wife of a wonderful, smart, caring, funny, responsible young man with CF. He has CF and that is what makes him the great man he is. He has strengths and talents that he wouldn't have developed without the trial of his disease. It is a personal choice but if you feel the desire to have another child then you should follow your heart and the rest will take care of itself. Because of CF I have may husband and I wouldn't change him in anyway (except get rid of his road rage, it is his biggest weakness)! My husband and I plan on having children, CF or not, its not up to us but what is up to us is providing any children we are blessed with into our home with love and helping them develop into great, strong people.

 

[Mandy]

I know that you have had a flood of responses to your question and are probably sick of everybody's advice but I just wanted you to know that it makes me sick to hear people say you should not have more children because there is a risk the child might have CF. It literally hurts me to hear them say that because I am the wife of a wonderful, smart, caring, funny, responsible young man with CF. He has CF and that is what makes him the great man he is. He has strengths and talents that he wouldn't have developed without the trial of his disease. It is a personal choice but if you feel the desire to have another child then you should follow your heart and the rest will take care of itself. Because of CF I have may husband and I wouldn't change him in anyway (except get rid of his road rage, it is his biggest weakness)! My husband and I plan on having children, CF or not, its not up to us but what is up to us is providing any children we are blessed with into our home with love and helping them develop into great, strong people.

 

[Mandy]

I know that you have had a flood of responses to your question and are probably sick of everybody's advice but I just wanted you to know that it makes me sick to hear people say you should not have more children because there is a risk the child might have CF. It literally hurts me to hear them say that because I am the wife of a wonderful, smart, caring, funny, responsible young man with CF. He has CF and that is what makes him the great man he is. He has strengths and talents that he wouldn't have developed without the trial of his disease. It is a personal choice but if you feel the desire to have another child then you should follow your heart and the rest will take care of itself. Because of CF I have may husband and I wouldn't change him in anyway (except get rid of his road rage, it is his biggest weakness)! My husband and I plan on having children, CF or not, its not up to us but what is up to us is providing any children we are blessed with into our home with love and helping them develop into great, strong people.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mandy</b></i>
I just wanted you to know that it makes me sick to hear people say you should not have more children because there is a risk the child might have CF. It literally hurts me to hear them say that because I am the wife of a wonderful, smart, caring, funny, responsible young man with CF.</end quote></div>

It'll also literally hurt you to watch him die. <i>And I'm not saying that to be snarky. I'm simply making a point. He may be great, but he still has CF. And CF sucks.</i>

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mandy</b></i>
I just wanted you to know that it makes me sick to hear people say you should not have more children because there is a risk the child might have CF. It literally hurts me to hear them say that because I am the wife of a wonderful, smart, caring, funny, responsible young man with CF.</end quote></div>

It'll also literally hurt you to watch him die. <i>And I'm not saying that to be snarky. I'm simply making a point. He may be great, but he still has CF. And CF sucks.</i>

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mandy</b></i>
I just wanted you to know that it makes me sick to hear people say you should not have more children because there is a risk the child might have CF. It literally hurts me to hear them say that because I am the wife of a wonderful, smart, caring, funny, responsible young man with CF.</end quote></div>

It'll also literally hurt you to watch him die. <i>And I'm not saying that to be snarky. I'm simply making a point. He may be great, but he still has CF. And CF sucks.</i>

 

[blindhearted]

I usually dont reply to topics like this because it is such a touchy subject.

sknoell, if you post something up here and ask for opinions, then you need to realize that you will get a lot of different views from people that believe different things and just because the majority doesnt say what you hope for doesnt mean they are being spiteful. Actually it's far from it, they are trying to be helpful.

I know you say your son has very mild CF and rare mutations but CF is different for everyone...including those with the same mutations. I have talk to ppl up here who has the same mutation as I do and are healthier than me and some who are sicker than me. I have always done my treatments and medication. It's just the progression of the disease. CF is unpredicable. I think that is what some ppl up here are trying to point out and want you to understand that. I dont mean to sound like a lecture, but I just felt like I needed to say that.

I wish you and your family the best of luck on this decision.

 

[blindhearted]

I usually dont reply to topics like this because it is such a touchy subject.

sknoell, if you post something up here and ask for opinions, then you need to realize that you will get a lot of different views from people that believe different things and just because the majority doesnt say what you hope for doesnt mean they are being spiteful. Actually it's far from it, they are trying to be helpful.

I know you say your son has very mild CF and rare mutations but CF is different for everyone...including those with the same mutations. I have talk to ppl up here who has the same mutation as I do and are healthier than me and some who are sicker than me. I have always done my treatments and medication. It's just the progression of the disease. CF is unpredicable. I think that is what some ppl up here are trying to point out and want you to understand that. I dont mean to sound like a lecture, but I just felt like I needed to say that.

I wish you and your family the best of luck on this decision.

 

[blindhearted]

I usually dont reply to topics like this because it is such a touchy subject.

sknoell, if you post something up here and ask for opinions, then you need to realize that you will get a lot of different views from people that believe different things and just because the majority doesnt say what you hope for doesnt mean they are being spiteful. Actually it's far from it, they are trying to be helpful.

I know you say your son has very mild CF and rare mutations but CF is different for everyone...including those with the same mutations. I have talk to ppl up here who has the same mutation as I do and are healthier than me and some who are sicker than me. I have always done my treatments and medication. It's just the progression of the disease. CF is unpredicable. I think that is what some ppl up here are trying to point out and want you to understand that. I dont mean to sound like a lecture, but I just felt like I needed to say that.

I wish you and your family the best of luck on this decision.

 

[littledebbie]

I'm not reading all these replies so if I'm repeating I apologize.

I do feel I am qualified to address one of your issues though so here it is.

My parents planned on having more children but after me and my issues came along they stopped. That was their choice (and yes in all honesty I wish they had stopped a bit sooner <img src="">) I have never felt that their decision to not have more kids because of the risk of CF was some type of rejection of me. I have ALWAYS thought that it was smart, Even when I was very little I understood it. My parents felt another child would compromise the care they could give me among other realistic issues, like not wanting to put another kiddo through this.

Also....I have to say that I think it's somewhat unfair that when healthier CF folks report their experiences with CF they are referred to as "supportive" and when those who've had a tougher time respond with their experiences it's categorized as somehow mean spirited.

And to state where I am coming from for anyone new I will restate my situation I am single 27 with CF FEV1 17% not Txing. My future is so bright I have to wear shades*sarcasm*. And if my parents could have made a choice to have me or not I would have voted not. That being said I am here and have enjoyed my life and I'm not looking forward to dying young too much.

 

[littledebbie]

I'm not reading all these replies so if I'm repeating I apologize.

I do feel I am qualified to address one of your issues though so here it is.

My parents planned on having more children but after me and my issues came along they stopped. That was their choice (and yes in all honesty I wish they had stopped a bit sooner <img src="">) I have never felt that their decision to not have more kids because of the risk of CF was some type of rejection of me. I have ALWAYS thought that it was smart, Even when I was very little I understood it. My parents felt another child would compromise the care they could give me among other realistic issues, like not wanting to put another kiddo through this.

Also....I have to say that I think it's somewhat unfair that when healthier CF folks report their experiences with CF they are referred to as "supportive" and when those who've had a tougher time respond with their experiences it's categorized as somehow mean spirited.

And to state where I am coming from for anyone new I will restate my situation I am single 27 with CF FEV1 17% not Txing. My future is so bright I have to wear shades*sarcasm*. And if my parents could have made a choice to have me or not I would have voted not. That being said I am here and have enjoyed my life and I'm not looking forward to dying young too much.

 

[littledebbie]

I'm not reading all these replies so if I'm repeating I apologize.

I do feel I am qualified to address one of your issues though so here it is.

My parents planned on having more children but after me and my issues came along they stopped. That was their choice (and yes in all honesty I wish they had stopped a bit sooner <img src="">) I have never felt that their decision to not have more kids because of the risk of CF was some type of rejection of me. I have ALWAYS thought that it was smart, Even when I was very little I understood it. My parents felt another child would compromise the care they could give me among other realistic issues, like not wanting to put another kiddo through this.

Also....I have to say that I think it's somewhat unfair that when healthier CF folks report their experiences with CF they are referred to as "supportive" and when those who've had a tougher time respond with their experiences it's categorized as somehow mean spirited.

And to state where I am coming from for anyone new I will restate my situation I am single 27 with CF FEV1 17% not Txing. My future is so bright I have to wear shades*sarcasm*. And if my parents could have made a choice to have me or not I would have voted not. That being said I am here and have enjoyed my life and I'm not looking forward to dying young too much.

 

[dasjsmum]

Hi again

I just thought I would add that our second child was a 'surprise', there was no test for cf invitro at that stage, but I wouldnt have had it anyhow (my choice, dont believe in abortion).

We werent going to have any more children due to cf, but later, when our kids were well into their teens, and were both so healthy, we made the decision to have another child...who does have cf also. Finally, our last child was conceived due to contraception problem (surprise!!!), but doesnt have cf.

We view life as more than just our physical presence, each one of us in an eternal being, cf or not.

We would not have had more children if our kids had been sicker (neither of them had been hospitalised at that time), and didnt view cf as a reason not to have more children, as it wasnt impacting on our lives at all.

 

[dasjsmum]

Hi again

I just thought I would add that our second child was a 'surprise', there was no test for cf invitro at that stage, but I wouldnt have had it anyhow (my choice, dont believe in abortion).

We werent going to have any more children due to cf, but later, when our kids were well into their teens, and were both so healthy, we made the decision to have another child...who does have cf also. Finally, our last child was conceived due to contraception problem (surprise!!!), but doesnt have cf.

We view life as more than just our physical presence, each one of us in an eternal being, cf or not.

We would not have had more children if our kids had been sicker (neither of them had been hospitalised at that time), and didnt view cf as a reason not to have more children, as it wasnt impacting on our lives at all.

 

[dasjsmum]

Hi again

I just thought I would add that our second child was a 'surprise', there was no test for cf invitro at that stage, but I wouldnt have had it anyhow (my choice, dont believe in abortion).

We werent going to have any more children due to cf, but later, when our kids were well into their teens, and were both so healthy, we made the decision to have another child...who does have cf also. Finally, our last child was conceived due to contraception problem (surprise!!!), but doesnt have cf.

We view life as more than just our physical presence, each one of us in an eternal being, cf or not.

We would not have had more children if our kids had been sicker (neither of them had been hospitalised at that time), and didnt view cf as a reason not to have more children, as it wasnt impacting on our lives at all.