Possible CF Baby

[LouLou]

Mommy2Alysa,

I think you are downplaying the realities of cf. It's good to be optimistic but to say it's a "liveable disease" is just not fair to many cfers that have aweful lives that result in a brutal, early death. I have a wonderful life that I am very proud of but each day I struggle to breath at some point. I spend 3 hours a day on my care when I'm well. Also, where do you get that cfers can't go in hottubs?

It's safe to say cf outcomes vary greatly. Do you know what your daughters mutations are? Just to clarify, in case no one has ever told you, cf can be avoided in your future pregnancies by selecting out the sperm that carry cf and only implanting those that are cf carrier free into you. This is IVF. It's so excepted now that most insurances will pay for it because it will save them soooooo much money to not have to cover another cf patient. Many cf carrier couples would abort if an accidental pregnancy happened. Prepare yourself for questions from your daughter why you didn't take precautions to not bring another cfer into HER home. Personally I would be pissed at my parents had they continued to have children....rolling the dice so to speak. For myself, I wouldn't choose abortion but people shouldn't be frowned upon for not wanting to bring a cf child into the world.

The median age of life expectancy (SURVIVAL) is 36.8 years.

 

[LouLou]

Fathertobe,

With a diagnosis now (instead of in the 70's like me) the outlook is much better. Your child will be able to do everything a normal child can do most likely. Exercise is encouraged and cf doesn't effect the intellect. Limitations only come into play if the digestive portion of the disease is not properly controlled and when the lung disease advances which is usually a gradual problem that arises during adolescence for most. If you have a boy he will likely be sterile. The sperm are inside though so they can harvest them and he and his wife can pursue IVF or PGD. There are many treatments in the fight against cf now that make a life of 50 or 60 years old much more plausible for someone born today with cf. An early diagnosis is key. You will be able to get him/her on a care regimine that will help slow the progressive nature of cf. All the best. I hope (s)he doesn't have cf but if you do get the diagnosis, please stick around. There is a lot of support you and your g-friend can gain here (and offer!).

 

[LouLou]

Fathertobe,

With a diagnosis now (instead of in the 70's like me) the outlook is much better. Your child will be able to do everything a normal child can do most likely. Exercise is encouraged and cf doesn't effect the intellect. Limitations only come into play if the digestive portion of the disease is not properly controlled and when the lung disease advances which is usually a gradual problem that arises during adolescence for most. If you have a boy he will likely be sterile. The sperm are inside though so they can harvest them and he and his wife can pursue IVF or PGD. There are many treatments in the fight against cf now that make a life of 50 or 60 years old much more plausible for someone born today with cf. An early diagnosis is key. You will be able to get him/her on a care regimine that will help slow the progressive nature of cf. All the best. I hope (s)he doesn't have cf but if you do get the diagnosis, please stick around. There is a lot of support you and your g-friend can gain here (and offer!).

 

[LouLou]

Fathertobe,

With a diagnosis now (instead of in the 70's like me) the outlook is much better. Your child will be able to do everything a normal child can do most likely. Exercise is encouraged and cf doesn't effect the intellect. Limitations only come into play if the digestive portion of the disease is not properly controlled and when the lung disease advances which is usually a gradual problem that arises during adolescence for most. If you have a boy he will likely be sterile. The sperm are inside though so they can harvest them and he and his wife can pursue IVF or PGD. There are many treatments in the fight against cf now that make a life of 50 or 60 years old much more plausible for someone born today with cf. An early diagnosis is key. You will be able to get him/her on a care regimine that will help slow the progressive nature of cf. All the best. I hope (s)he doesn't have cf but if you do get the diagnosis, please stick around. There is a lot of support you and your g-friend can gain here (and offer!).

 

[mneville]

Wow Lauren- that was a little harsh to a mother who is trying to be optimistic and encouraging to another parent of a possible CFer. As a parent of a two year old Double Delta, I needed to hear words like that in the beginning. Having CF and being a parent of one with CF are two different viewpoints and I think both need to be respected.

Also- for your information, many insurance companies are NOT covering PGD for those of us that try to have non CF children. I have good medical insurance and PGD was not covered after many appeals to the insurance company that this would save them millions in the long run. So we had to pay many out of pocket expenses to try IVF/PGD which many families (already dealing with the expense of CF) simply cannot afford.

Megan

 

[mneville]

Wow Lauren- that was a little harsh to a mother who is trying to be optimistic and encouraging to another parent of a possible CFer. As a parent of a two year old Double Delta, I needed to hear words like that in the beginning. Having CF and being a parent of one with CF are two different viewpoints and I think both need to be respected.

Also- for your information, many insurance companies are NOT covering PGD for those of us that try to have non CF children. I have good medical insurance and PGD was not covered after many appeals to the insurance company that this would save them millions in the long run. So we had to pay many out of pocket expenses to try IVF/PGD which many families (already dealing with the expense of CF) simply cannot afford.

Megan

 

[mneville]

Wow Lauren- that was a little harsh to a mother who is trying to be optimistic and encouraging to another parent of a possible CFer. As a parent of a two year old Double Delta, I needed to hear words like that in the beginning. Having CF and being a parent of one with CF are two different viewpoints and I think both need to be respected.

Also- for your information, many insurance companies are NOT covering PGD for those of us that try to have non CF children. I have good medical insurance and PGD was not covered after many appeals to the insurance company that this would save them millions in the long run. So we had to pay many out of pocket expenses to try IVF/PGD which many families (already dealing with the expense of CF) simply cannot afford.

Megan

 

[Mommy2Alysa]

LouLou,

My daugther Alysa (20 months) was just diagnosed in November so this is all really new to me and thanks alot for saying that you would be pissed if you were a child and found another child in the home that was due to an accidental pregnancy. I am currently pregnant and we didnt do any of that genetic stuff you mentioned because we didnt know about it.... so great make me feel like my daughter will hate me. Besides how do you think your first child, or the child that you geneticly selected, would feel?

To me: If i had cf and then found out my parents actually made it so they didnt have another cf child, I would feel like something was wrong with me in the fact that they tried to prevent what happened to me to happen again. I dont want my daugther to feel like a freak or anything at stopping my wish to have more than one child with her just because she has CF. That is mean and cruel (in my opinion anyway)

My daughter's case must not be that bad I guess cause she acts fine and doesnt seem sick, doesnt struggle for breath or anything.

The hot tub comment was told me to by the doctors because of the heat and bacteria that are found growing in hot tubs.

wow you sure told me.... I wont post another message again trying to give some parents hope when all they are going to hear for a bit is how serious CF is....

 

[Mommy2Alysa]

LouLou,

My daugther Alysa (20 months) was just diagnosed in November so this is all really new to me and thanks alot for saying that you would be pissed if you were a child and found another child in the home that was due to an accidental pregnancy. I am currently pregnant and we didnt do any of that genetic stuff you mentioned because we didnt know about it.... so great make me feel like my daughter will hate me. Besides how do you think your first child, or the child that you geneticly selected, would feel?

To me: If i had cf and then found out my parents actually made it so they didnt have another cf child, I would feel like something was wrong with me in the fact that they tried to prevent what happened to me to happen again. I dont want my daugther to feel like a freak or anything at stopping my wish to have more than one child with her just because she has CF. That is mean and cruel (in my opinion anyway)

My daughter's case must not be that bad I guess cause she acts fine and doesnt seem sick, doesnt struggle for breath or anything.

The hot tub comment was told me to by the doctors because of the heat and bacteria that are found growing in hot tubs.

wow you sure told me.... I wont post another message again trying to give some parents hope when all they are going to hear for a bit is how serious CF is....

 

[Mommy2Alysa]

LouLou,

My daugther Alysa (20 months) was just diagnosed in November so this is all really new to me and thanks alot for saying that you would be pissed if you were a child and found another child in the home that was due to an accidental pregnancy. I am currently pregnant and we didnt do any of that genetic stuff you mentioned because we didnt know about it.... so great make me feel like my daughter will hate me. Besides how do you think your first child, or the child that you geneticly selected, would feel?

To me: If i had cf and then found out my parents actually made it so they didnt have another cf child, I would feel like something was wrong with me in the fact that they tried to prevent what happened to me to happen again. I dont want my daugther to feel like a freak or anything at stopping my wish to have more than one child with her just because she has CF. That is mean and cruel (in my opinion anyway)

My daughter's case must not be that bad I guess cause she acts fine and doesnt seem sick, doesnt struggle for breath or anything.

The hot tub comment was told me to by the doctors because of the heat and bacteria that are found growing in hot tubs.

wow you sure told me.... I wont post another message again trying to give some parents hope when all they are going to hear for a bit is how serious CF is....

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommy2Alysa</b></i>
wow you sure told me.... I wont post another message again trying to give some parents hope when all they are going to hear for a bit is how serious CF is....</end quote></div>


</br>The reason people hear about how bad CF is at first is because they need to hear it. They need to be told the cold hard facts to fully grasp the magnitude of this illness. And Lauren, despite not being politically correct, is right. People downplay this disease way too much when children are involved, probably to make <i>themselves</i> feel better. Young mothers can't grasp this concept, it seems, I suppose because their child is so young that they haven't seen CF rear its ugly head yet. As someone who's dealt with annual hospital stays since age 12, with a mediport, staph, and psudo that hasn't left me alone for four consecutive months, pumped full of I.V.s and taking more than 10 meds a day, that is how I truly feel, and I refuse to sugar-coat it. The original poster asked for facts. Is CF livable? Yep. Would you choose to live with it? "NO!" would be the understatement of the year. Sorry, but it always makes my blood boil when I feel that someone is downplaying CF.<br>

</br>Greg, I don't think you are in the wrong at all for hoping for a healthy baby boy. I sincerely hope that that is the outcome for you and your girlfriend. I'll try answer your questions as best I can:<br>

</br>1. Are babies with CF healthy? - That can vary greatly. I, for example, wasn't diagnosed until I was three months old. During that time, I would hardly eat and I was sick quite often. I would say early diagnosis is key.<br>

</br>2. Can you live a normal life? - Depends on what you mean by normal, and again, this can vary greatly. Physical activity is usually limited, and progressively worse with age. Hospital stays can be frequent, and medications are a part of daily life. However, you can still have all the experiences a normal person can have; a house, a family, a job, school, etc. It very much depends on the degree of sickness, but most CF'ers live fairly normally.<br>

</br>3. Does insurance cover the costs? - To a degree, most insurance companies will cover hospital stays and medications. You will most likely still have copays. My mother works for the federal government, so her health insurance is pretty good. Because I'm considered a disabled adult, I can remain on her plan even after 21. So it really depends, again, on what kind of insurance you have. You can also apply for assistance, a.k.a. Medicaid and SSI. That's a whole other ballgame, though...<br>

</br>4. How can I comfort my girlfriend if we do find out the baby is positive with CF because abortion is not an option? - The best advice I can give is to let her know that, though the child has CF, you can still be a family, and hopefully the disease will have little impact for as long as possible. Plus, with a diagnosis in this day and age, life expectancy will increase and new medications will become available. I won't lie; it'll be very difficult at times. But your son will still be your son, no matter what.<br>

</br>Good luck to you!

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommy2Alysa</b></i>
wow you sure told me.... I wont post another message again trying to give some parents hope when all they are going to hear for a bit is how serious CF is....</end quote></div>


</br>The reason people hear about how bad CF is at first is because they need to hear it. They need to be told the cold hard facts to fully grasp the magnitude of this illness. And Lauren, despite not being politically correct, is right. People downplay this disease way too much when children are involved, probably to make <i>themselves</i> feel better. Young mothers can't grasp this concept, it seems, I suppose because their child is so young that they haven't seen CF rear its ugly head yet. As someone who's dealt with annual hospital stays since age 12, with a mediport, staph, and psudo that hasn't left me alone for four consecutive months, pumped full of I.V.s and taking more than 10 meds a day, that is how I truly feel, and I refuse to sugar-coat it. The original poster asked for facts. Is CF livable? Yep. Would you choose to live with it? "NO!" would be the understatement of the year. Sorry, but it always makes my blood boil when I feel that someone is downplaying CF.<br>

</br>Greg, I don't think you are in the wrong at all for hoping for a healthy baby boy. I sincerely hope that that is the outcome for you and your girlfriend. I'll try answer your questions as best I can:<br>

</br>1. Are babies with CF healthy? - That can vary greatly. I, for example, wasn't diagnosed until I was three months old. During that time, I would hardly eat and I was sick quite often. I would say early diagnosis is key.<br>

</br>2. Can you live a normal life? - Depends on what you mean by normal, and again, this can vary greatly. Physical activity is usually limited, and progressively worse with age. Hospital stays can be frequent, and medications are a part of daily life. However, you can still have all the experiences a normal person can have; a house, a family, a job, school, etc. It very much depends on the degree of sickness, but most CF'ers live fairly normally.<br>

</br>3. Does insurance cover the costs? - To a degree, most insurance companies will cover hospital stays and medications. You will most likely still have copays. My mother works for the federal government, so her health insurance is pretty good. Because I'm considered a disabled adult, I can remain on her plan even after 21. So it really depends, again, on what kind of insurance you have. You can also apply for assistance, a.k.a. Medicaid and SSI. That's a whole other ballgame, though...<br>

</br>4. How can I comfort my girlfriend if we do find out the baby is positive with CF because abortion is not an option? - The best advice I can give is to let her know that, though the child has CF, you can still be a family, and hopefully the disease will have little impact for as long as possible. Plus, with a diagnosis in this day and age, life expectancy will increase and new medications will become available. I won't lie; it'll be very difficult at times. But your son will still be your son, no matter what.<br>

</br>Good luck to you!

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommy2Alysa</b></i>
wow you sure told me.... I wont post another message again trying to give some parents hope when all they are going to hear for a bit is how serious CF is....</end quote></div>


</br>The reason people hear about how bad CF is at first is because they need to hear it. They need to be told the cold hard facts to fully grasp the magnitude of this illness. And Lauren, despite not being politically correct, is right. People downplay this disease way too much when children are involved, probably to make <i>themselves</i> feel better. Young mothers can't grasp this concept, it seems, I suppose because their child is so young that they haven't seen CF rear its ugly head yet. As someone who's dealt with annual hospital stays since age 12, with a mediport, staph, and psudo that hasn't left me alone for four consecutive months, pumped full of I.V.s and taking more than 10 meds a day, that is how I truly feel, and I refuse to sugar-coat it. The original poster asked for facts. Is CF livable? Yep. Would you choose to live with it? "NO!" would be the understatement of the year. Sorry, but it always makes my blood boil when I feel that someone is downplaying CF.<br>

</br>Greg, I don't think you are in the wrong at all for hoping for a healthy baby boy. I sincerely hope that that is the outcome for you and your girlfriend. I'll try answer your questions as best I can:<br>

</br>1. Are babies with CF healthy? - That can vary greatly. I, for example, wasn't diagnosed until I was three months old. During that time, I would hardly eat and I was sick quite often. I would say early diagnosis is key.<br>

</br>2. Can you live a normal life? - Depends on what you mean by normal, and again, this can vary greatly. Physical activity is usually limited, and progressively worse with age. Hospital stays can be frequent, and medications are a part of daily life. However, you can still have all the experiences a normal person can have; a house, a family, a job, school, etc. It very much depends on the degree of sickness, but most CF'ers live fairly normally.<br>

</br>3. Does insurance cover the costs? - To a degree, most insurance companies will cover hospital stays and medications. You will most likely still have copays. My mother works for the federal government, so her health insurance is pretty good. Because I'm considered a disabled adult, I can remain on her plan even after 21. So it really depends, again, on what kind of insurance you have. You can also apply for assistance, a.k.a. Medicaid and SSI. That's a whole other ballgame, though...<br>

</br>4. How can I comfort my girlfriend if we do find out the baby is positive with CF because abortion is not an option? - The best advice I can give is to let her know that, though the child has CF, you can still be a family, and hopefully the disease will have little impact for as long as possible. Plus, with a diagnosis in this day and age, life expectancy will increase and new medications will become available. I won't lie; it'll be very difficult at times. But your son will still be your son, no matter what.<br>

</br>Good luck to you!

 

[Scarlett81]

I would rather be a parent to a child with a disease like cf than a parent to a child with a disease like retardation or severe deformity. The pain of watching your child would be great at time with both cases-but I think mommy2alysa's point is, your child would have no physical handicap, no mental handicap, and be able to express love to you and others and have normal relationships.
You know I have a dear old friend who has a son with Down's, and a nephew with Autism. She is always thankful that her son had the down's and wasn't autistic b/c at least he can say to her-mommy I love you. And at least he can express happiness. With autism, usually they can't express any emotion. No, she doesn't downplay the disease or make it out to be nothing. But for her compared to other things it could be worse.
I think thats all mommy2 alysa was saying. It could be worse next to other things. Yes I do feel that Cf is "normal" life. Whatever normal is these days. Once that life is there-its a precious life. And I don't agree that another sibling will say-Mom, why did you have me when you knew there was a chance I'd have this cf?, thanks alot mom. No, b/c once you are alive and doing valuable things with your life you'd never say that. Your life is always valuable.
I do think parents should take extreme caution when going into pregnancy as carriers. Its a huge responsibility. I personally had made the decision to not have kids biologically if my hubby turned out to be a carrier. But I have cf, so thats my perspective.
Know that if you have a cf child, it will be alot harder at times, and painful for them and for you. There will be times when you can't do the typical parent/kid stuff. But being a parent to them will be no less rewarding and fun. And as was mentioned-a baby dx'd with cf now as compared to when I was (80s), BIG difference. Your kids has a HUGE chance of looking at a normal life span.

 

[Scarlett81]

I would rather be a parent to a child with a disease like cf than a parent to a child with a disease like retardation or severe deformity. The pain of watching your child would be great at time with both cases-but I think mommy2alysa's point is, your child would have no physical handicap, no mental handicap, and be able to express love to you and others and have normal relationships.
You know I have a dear old friend who has a son with Down's, and a nephew with Autism. She is always thankful that her son had the down's and wasn't autistic b/c at least he can say to her-mommy I love you. And at least he can express happiness. With autism, usually they can't express any emotion. No, she doesn't downplay the disease or make it out to be nothing. But for her compared to other things it could be worse.
I think thats all mommy2 alysa was saying. It could be worse next to other things. Yes I do feel that Cf is "normal" life. Whatever normal is these days. Once that life is there-its a precious life. And I don't agree that another sibling will say-Mom, why did you have me when you knew there was a chance I'd have this cf?, thanks alot mom. No, b/c once you are alive and doing valuable things with your life you'd never say that. Your life is always valuable.
I do think parents should take extreme caution when going into pregnancy as carriers. Its a huge responsibility. I personally had made the decision to not have kids biologically if my hubby turned out to be a carrier. But I have cf, so thats my perspective.
Know that if you have a cf child, it will be alot harder at times, and painful for them and for you. There will be times when you can't do the typical parent/kid stuff. But being a parent to them will be no less rewarding and fun. And as was mentioned-a baby dx'd with cf now as compared to when I was (80s), BIG difference. Your kids has a HUGE chance of looking at a normal life span.

 

[Scarlett81]

I would rather be a parent to a child with a disease like cf than a parent to a child with a disease like retardation or severe deformity. The pain of watching your child would be great at time with both cases-but I think mommy2alysa's point is, your child would have no physical handicap, no mental handicap, and be able to express love to you and others and have normal relationships.
You know I have a dear old friend who has a son with Down's, and a nephew with Autism. She is always thankful that her son had the down's and wasn't autistic b/c at least he can say to her-mommy I love you. And at least he can express happiness. With autism, usually they can't express any emotion. No, she doesn't downplay the disease or make it out to be nothing. But for her compared to other things it could be worse.
I think thats all mommy2 alysa was saying. It could be worse next to other things. Yes I do feel that Cf is "normal" life. Whatever normal is these days. Once that life is there-its a precious life. And I don't agree that another sibling will say-Mom, why did you have me when you knew there was a chance I'd have this cf?, thanks alot mom. No, b/c once you are alive and doing valuable things with your life you'd never say that. Your life is always valuable.
I do think parents should take extreme caution when going into pregnancy as carriers. Its a huge responsibility. I personally had made the decision to not have kids biologically if my hubby turned out to be a carrier. But I have cf, so thats my perspective.
Know that if you have a cf child, it will be alot harder at times, and painful for them and for you. There will be times when you can't do the typical parent/kid stuff. But being a parent to them will be no less rewarding and fun. And as was mentioned-a baby dx'd with cf now as compared to when I was (80s), BIG difference. Your kids has a HUGE chance of looking at a normal life span.

 

[shammi80]

Wow, you said it! My brother had CF and he passed away 3 weeks ago at the age of 27. CF was brutal to him, every breath was a struggle, every step a pain, every day wondering if he was going to make it. He had a double lung transplant, a colostomy, double knee replacement and his kidneys failed. I had an accidental pregnancy and had the amnio early because I refused to bring a cf baby into this world knowing what I knew. I could not stand the fact that I knew I could stop this baby's suffering before it started, luckily I didn't have to choose that. She is now 6 years old and a carrier like myself. I think people like us that know we carry the gene have a responsibility to make sure the disease ends by not rolling the dice. I had a complete hysterectomy after she was born and she will be very educated in how not to have a baby with cf. It's an illness and a death I wouldn't wish on my worst enemy. On the other hand CF can be manageable to some and I'm not saying your lives mean nothing, because they do. My brother had an awesome life, marriage, education and career and I'm richer for having known him.

-----------------------------------------------------------------------------------------------
Shammi 27, single copy dF508, mother of Jadalyn 6, single copy dF508, sister to Shaylan CF, 10-29-79----12-28-06

 

[shammi80]

Wow, you said it! My brother had CF and he passed away 3 weeks ago at the age of 27. CF was brutal to him, every breath was a struggle, every step a pain, every day wondering if he was going to make it. He had a double lung transplant, a colostomy, double knee replacement and his kidneys failed. I had an accidental pregnancy and had the amnio early because I refused to bring a cf baby into this world knowing what I knew. I could not stand the fact that I knew I could stop this baby's suffering before it started, luckily I didn't have to choose that. She is now 6 years old and a carrier like myself. I think people like us that know we carry the gene have a responsibility to make sure the disease ends by not rolling the dice. I had a complete hysterectomy after she was born and she will be very educated in how not to have a baby with cf. It's an illness and a death I wouldn't wish on my worst enemy. On the other hand CF can be manageable to some and I'm not saying your lives mean nothing, because they do. My brother had an awesome life, marriage, education and career and I'm richer for having known him.

-----------------------------------------------------------------------------------------------
Shammi 27, single copy dF508, mother of Jadalyn 6, single copy dF508, sister to Shaylan CF, 10-29-79----12-28-06

 

[shammi80]

Wow, you said it! My brother had CF and he passed away 3 weeks ago at the age of 27. CF was brutal to him, every breath was a struggle, every step a pain, every day wondering if he was going to make it. He had a double lung transplant, a colostomy, double knee replacement and his kidneys failed. I had an accidental pregnancy and had the amnio early because I refused to bring a cf baby into this world knowing what I knew. I could not stand the fact that I knew I could stop this baby's suffering before it started, luckily I didn't have to choose that. She is now 6 years old and a carrier like myself. I think people like us that know we carry the gene have a responsibility to make sure the disease ends by not rolling the dice. I had a complete hysterectomy after she was born and she will be very educated in how not to have a baby with cf. It's an illness and a death I wouldn't wish on my worst enemy. On the other hand CF can be manageable to some and I'm not saying your lives mean nothing, because they do. My brother had an awesome life, marriage, education and career and I'm richer for having known him.

-----------------------------------------------------------------------------------------------
Shammi 27, single copy dF508, mother of Jadalyn 6, single copy dF508, sister to Shaylan CF, 10-29-79----12-28-06

 

[anonymous]

I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!