I want children!

[RainbowBubblez]

Well I want children so bad!! I feel like I have to do it secretly with out the Doctors knowing because of the way they act. They frustrate me badly! Having a child at the same time is huge and they should be involoved for the sake of the child but just their negativity kills me!Of course they will be invlolved anyways when I do get pregnant.It just makes me wonder if I should just do things the way I want. Is it that bad?? My g/f has CF and she was 98lbs and her pft's were 38% and she is due in like 2 weeks so why cant I just up and be pregnant too? Im just wondering if there is anyone else out there in this situation......

 

[RainbowBubblez]

Well I want children so bad!! I feel like I have to do it secretly with out the Doctors knowing because of the way they act. They frustrate me badly! Having a child at the same time is huge and they should be involoved for the sake of the child but just their negativity kills me!Of course they will be invlolved anyways when I do get pregnant.It just makes me wonder if I should just do things the way I want. Is it that bad?? My g/f has CF and she was 98lbs and her pft's were 38% and she is due in like 2 weeks so why cant I just up and be pregnant too? Im just wondering if there is anyone else out there in this situation......

 

[Emily65Roses]

The decision is yours, and it's too bad your docs are so negative about it. But they're just trying to save you from *possible* health problems. If it's something you really want, I say do it. But after it's done, and you're pregnant, keep them involved, because you'll need their help.

 

[Emily65Roses]

The decision is yours, and it's too bad your docs are so negative about it. But they're just trying to save you from *possible* health problems. If it's something you really want, I say do it. But after it's done, and you're pregnant, keep them involved, because you'll need their help.

 

[JennifersHope]

Hi Amanda,

Gosh I read your post and just can totally feel for you...I think that you have to make your own decisions in life...My advice is along with Emily's. I would educate yourself as much as you possibly can.... know all the risks involved.. know and realize that you can lose considerable ground in your health....or NOT... go though all the risks... and follow it though.. Write out the best case scenerio and also the worst.. and if in your heart you end up wanting a baby.. I say go for it......

I have since I was a very small child.. wanted to be pregnant, even as a small child I would stuff pillows in my shirt and walk around 'pregnant" I always wanted to nurse my children..and know what it feels like to carry a baby inside of me....I still deeply have that feeling.. and I don't think anything will make it go away...though I am not acting on it..at this point.. for a ton of reasons

I also have done some things that my doctors would have preferred me not to.. such as going to nursing school and becoming a nurse..Not exactly gettng pregnant but It is not ideal for my health..but I am an adult. I weighed all the risks.... and I decided to go for it... I don't hide that fact from my doctors that I am in school. I just tell them. this is my goal and this is what I am doing.. and ask them to help me to achieve it.in spite of not agreeing ....For the most part they are willing to help me get though..my primary is dead set against it personally,, but he knows that I am dead set for it..and is willing to work with me for the most part..My CF doctor (DR Fiel) who I just started seeing in Aug is so willing to get me through school.. though he doesn't want me in a dirty area of the hospital. He has done the most amzing things on my behalf to keep me in school.. esp the last few weeks.. but he always does . I don't want to get into details of it though... surfice it to say he is great.....

I would find at least try to find one doctor that would be willing to help you achieve your goals and carry a baby...Get your body in the best shape possible before hand.. I am sure some of the CF moms on here will post.. I have a friend Christy who has an amaznig daughter who is 9 now ( I think) and she stayed healthy for a while after pregnacy.. and when she got sick...she got sick fast and hard but it was non pregnacy related.. She is now doing great and 5 years post lung transplant....and also Melissa has a cute liittle girl Jazzy...

ANyway I am going on and on.. Go for your dreams.... Just be smart as you can about it... Don't live your life with regrets and what ifs.. I know that I have learned that.. when I am taking my last breaths.. I don't think I will have a lot of oh I wish I tried this or that ... I am going to say.. I am glad I went for it..and tried all of the things earth has to offer...and I will be ready to move on to Heaven..... I am not saying be unwise...and risk your life.. but you know what I mean..

Hope this helps....

Jennifer
33 w/ Mild Cf and Addison's

 

[JennifersHope]

Hi Amanda,

Gosh I read your post and just can totally feel for you...I think that you have to make your own decisions in life...My advice is along with Emily's. I would educate yourself as much as you possibly can.... know all the risks involved.. know and realize that you can lose considerable ground in your health....or NOT... go though all the risks... and follow it though.. Write out the best case scenerio and also the worst.. and if in your heart you end up wanting a baby.. I say go for it......

I have since I was a very small child.. wanted to be pregnant, even as a small child I would stuff pillows in my shirt and walk around 'pregnant" I always wanted to nurse my children..and know what it feels like to carry a baby inside of me....I still deeply have that feeling.. and I don't think anything will make it go away...though I am not acting on it..at this point.. for a ton of reasons

I also have done some things that my doctors would have preferred me not to.. such as going to nursing school and becoming a nurse..Not exactly gettng pregnant but It is not ideal for my health..but I am an adult. I weighed all the risks.... and I decided to go for it... I don't hide that fact from my doctors that I am in school. I just tell them. this is my goal and this is what I am doing.. and ask them to help me to achieve it.in spite of not agreeing ....For the most part they are willing to help me get though..my primary is dead set against it personally,, but he knows that I am dead set for it..and is willing to work with me for the most part..My CF doctor (DR Fiel) who I just started seeing in Aug is so willing to get me through school.. though he doesn't want me in a dirty area of the hospital. He has done the most amzing things on my behalf to keep me in school.. esp the last few weeks.. but he always does . I don't want to get into details of it though... surfice it to say he is great.....

I would find at least try to find one doctor that would be willing to help you achieve your goals and carry a baby...Get your body in the best shape possible before hand.. I am sure some of the CF moms on here will post.. I have a friend Christy who has an amaznig daughter who is 9 now ( I think) and she stayed healthy for a while after pregnacy.. and when she got sick...she got sick fast and hard but it was non pregnacy related.. She is now doing great and 5 years post lung transplant....and also Melissa has a cute liittle girl Jazzy...

ANyway I am going on and on.. Go for your dreams.... Just be smart as you can about it... Don't live your life with regrets and what ifs.. I know that I have learned that.. when I am taking my last breaths.. I don't think I will have a lot of oh I wish I tried this or that ... I am going to say.. I am glad I went for it..and tried all of the things earth has to offer...and I will be ready to move on to Heaven..... I am not saying be unwise...and risk your life.. but you know what I mean..

Hope this helps....

Jennifer
33 w/ Mild Cf and Addison's

 

[kybert]

98 lbs and fev1 of 38% to start off with and due in 2 weeks? and you think thats great? im not sure you fully understand the seriousness of the situation your friend is in. i know i certainly would not like to be in that situation. must be very scary for everyone involved.

everyone will tell you here that to be able to 'safely' have a baby you need to be in optimal health, VERY complient and above a certain fev1. and even that isnt a guarantee that the pregnancy will be smooth sailing. there are so many things to think about and simply 'wanting a baby so bad' doesnt mean that you can forget about all of those things. now about your doctors. i know that most adult doctors are pretty supportive of healthy cf'ers getting pregnant. so there must be a good reason as to why your doctors are being negative [low fev1? i know you said you have trouble with your weight]. i know if my doctor said to me 'kylie, i strongly suggest you dont get pregnant' id take his advice. but as em has said, the decision is yours and if you want it so bad go ahead. if you are healthy and the docs are over reacting, more power to ya. if not, then no one is stopping you anyway.

 

[kybert]

98 lbs and fev1 of 38% to start off with and due in 2 weeks? and you think thats great? im not sure you fully understand the seriousness of the situation your friend is in. i know i certainly would not like to be in that situation. must be very scary for everyone involved.

everyone will tell you here that to be able to 'safely' have a baby you need to be in optimal health, VERY complient and above a certain fev1. and even that isnt a guarantee that the pregnancy will be smooth sailing. there are so many things to think about and simply 'wanting a baby so bad' doesnt mean that you can forget about all of those things. now about your doctors. i know that most adult doctors are pretty supportive of healthy cf'ers getting pregnant. so there must be a good reason as to why your doctors are being negative [low fev1? i know you said you have trouble with your weight]. i know if my doctor said to me 'kylie, i strongly suggest you dont get pregnant' id take his advice. but as em has said, the decision is yours and if you want it so bad go ahead. if you are healthy and the docs are over reacting, more power to ya. if not, then no one is stopping you anyway.

 

[JennifersHope]

[No message]

 

[JennifersHope]

[No message]

 

[RainbowBubblez]

Thanks you guys I appreciate it. My girlfriend was 98lbs and 38% when she was 5 months prego and is now like 106 and due, & is on O2 24/7. Im just saying if a person with CF with PFT's and weight that low I should be able to be pregnant. I know I can can get my PFT's up if I want and I'm trying so hard right now they are 59% from 43% and I'm 103lbs. I think if I keep trying I might make it to maybe 65% -70% hopefully. Cuz being lower than 50% to me is just doesnt seem right. I know I have to take care of the baby afterwards and that is my Doctors main concern. Not me carrying the baby but taking care of the baby afterwards.

 

[RainbowBubblez]

Thanks you guys I appreciate it. My girlfriend was 98lbs and 38% when she was 5 months prego and is now like 106 and due, & is on O2 24/7. Im just saying if a person with CF with PFT's and weight that low I should be able to be pregnant. I know I can can get my PFT's up if I want and I'm trying so hard right now they are 59% from 43% and I'm 103lbs. I think if I keep trying I might make it to maybe 65% -70% hopefully. Cuz being lower than 50% to me is just doesnt seem right. I know I have to take care of the baby afterwards and that is my Doctors main concern. Not me carrying the baby but taking care of the baby afterwards.

 

[lovingBenandCambree]

I think that no doctor should make a decision like that for anyone. But I do think that you have a responsibility to yourself and to your future children to weigh all of the possibilities and even then you can't possibly know exactly how your body will respond to pregnancy. My only recommendation if you do get pregnant is to make sure that you keep your CF docs involved 100%. Never be afraid to go to the doctors if you feel something is different. I often thought that different concerns such as not being able to breath as well were just because I was pregnant and didn't realize what was going on with my CF. It took a toll on my lungs. I would never tell anyone not to get pregnant. It is absolutle the most amazing experience to have a child. My daughter keeps me young and gives me a greater purpose than I ever knew was possible. I personally made my decision through much prayer adn will do so again on making the decision to have another one. My doctors are highly against that as well. But I believe in a higher power above
Science. Good luck with your decision!

Emilee

 

[lovingBenandCambree]

I think that no doctor should make a decision like that for anyone. But I do think that you have a responsibility to yourself and to your future children to weigh all of the possibilities and even then you can't possibly know exactly how your body will respond to pregnancy. My only recommendation if you do get pregnant is to make sure that you keep your CF docs involved 100%. Never be afraid to go to the doctors if you feel something is different. I often thought that different concerns such as not being able to breath as well were just because I was pregnant and didn't realize what was going on with my CF. It took a toll on my lungs. I would never tell anyone not to get pregnant. It is absolutle the most amazing experience to have a child. My daughter keeps me young and gives me a greater purpose than I ever knew was possible. I personally made my decision through much prayer adn will do so again on making the decision to have another one. My doctors are highly against that as well. But I believe in a higher power above
Science. Good luck with your decision!

Emilee

 

[coltsfan715]

Hey Amanda,

I understand completely where you are coming from with wanting kids. I have always wanted kids and in the past few years my docs have told me that they recommend against it. Ultimately it is my decision and they and I both know that, but their recommendations are coming from the results of studies I do believe.
Obviously the higher your PFTs are the better the pregnancy will be and your health throughout and after. I have looked at studies in the past - none of which I have the web addresses to at present because I looked into it about 2 years ago when they first started telling me this and when I was trying to decide what to do for myself. Alot of studies give info that shows the fatality rate of women with CF during labor to 1 yr or 18 months after. Then 1yr/18 months to 2 years or something like that I can not remember exactly. Anyhow the numbers were numbing to me - I think the parameters were patients with PFTs over 60%(there didn't seem to be many problems in patients in this classification) and patients with PFTs under 60%(which is where my lung function is now and was when they first recommended I not get pregnant). I am not totally sure, like I said I looked at the stuff over a year ago.
I would definitely recommend trying to find some information on it, they have several studies and things posted online at different medical/school/medical learning facility websites also ask your CF doc and/or your OB/GYN if there is any place you can get info on CF and pregnancy and maybe they can point you in the right direction.

After I looked into it and talked it over with my fiance we decided that currently we are going to go the adoption route if we do decide to have children - or if possibly if someone that is trustworthy and close to us is willing look into surrogacy down the road, we have talked about both of those. Once again we made our decision after we looked at the facts and weighed the options.

No matter what you decide I am sure it will work out. Best of luck to you and best of luck to your friend. I hope that everything goes well with the rest of her pregnancy and her labor.

Lindsey

 

[coltsfan715]

Hey Amanda,

I understand completely where you are coming from with wanting kids. I have always wanted kids and in the past few years my docs have told me that they recommend against it. Ultimately it is my decision and they and I both know that, but their recommendations are coming from the results of studies I do believe.
Obviously the higher your PFTs are the better the pregnancy will be and your health throughout and after. I have looked at studies in the past - none of which I have the web addresses to at present because I looked into it about 2 years ago when they first started telling me this and when I was trying to decide what to do for myself. Alot of studies give info that shows the fatality rate of women with CF during labor to 1 yr or 18 months after. Then 1yr/18 months to 2 years or something like that I can not remember exactly. Anyhow the numbers were numbing to me - I think the parameters were patients with PFTs over 60%(there didn't seem to be many problems in patients in this classification) and patients with PFTs under 60%(which is where my lung function is now and was when they first recommended I not get pregnant). I am not totally sure, like I said I looked at the stuff over a year ago.
I would definitely recommend trying to find some information on it, they have several studies and things posted online at different medical/school/medical learning facility websites also ask your CF doc and/or your OB/GYN if there is any place you can get info on CF and pregnancy and maybe they can point you in the right direction.

After I looked into it and talked it over with my fiance we decided that currently we are going to go the adoption route if we do decide to have children - or if possibly if someone that is trustworthy and close to us is willing look into surrogacy down the road, we have talked about both of those. Once again we made our decision after we looked at the facts and weighed the options.

No matter what you decide I am sure it will work out. Best of luck to you and best of luck to your friend. I hope that everything goes well with the rest of her pregnancy and her labor.

Lindsey

 

[littledebbie]

I wanted to be a Mom always, as a kid and even when I was a teenager I never doubted I would one day be a Mother, I'm a natural. I have wanted it soo bad I can't adequetly put it into words. Then at 21 I got pregnant. My PFT's were probably in the 40's at the time. Let me tell you I thought I was going to die. It wasn't morning sickness, it was all day. i couldn't keep anythig down, I was dizzy I was low on O2 and they said no tobi when you're pregnant, my Dr. put me in the hospital and rounded up every specialist he could find to come talk to me. High risk pregnancy doc, every type of pulmonologist in the hospital etc. My scenario was not good. I had a ultra sound, I saw my baby, prognosis me or the baby would be dead by my 5th month, they could maybe take the baby as a premie but the cost to me was going to be substantial. I remember when I first saw Steel Magnolias at the end I thought...well that's great, she had her baby, but you know what the baby doesn't have a Mom, and her Mom lost her baby. I thought it was actually rather selfish. I wanted that baby with my every breath but I realized it was not to be for me, i had to let go.
I haven't given up the idea of becoming a Mom but now I think more of adoption or even the option of having my sister carry my baby for me. I still wish i could do it the natural way but really the more important thing for me is the child itslef, now how it comes to be. I'm not trying to me situation is your situation. i realize while we all have the same basic disease we are all affected very differently. I know some other cfers who have had rather smooth pregnancies. I'm just sharing my experience for you to consider. i should also say I'm not one for always doing what the dr. says either, so if you are sure you want to do this, i agree you shouldn't let them stand in your way. It's just I know this is a very emotional decision, try to be as honest with yourself as possible. Talk with your partner, talk to people who've adopted or done surrogacy. The stork is a very modern bird, his delivery service utilizes more than one route.

Good luck to you.

 

[littledebbie]

I wanted to be a Mom always, as a kid and even when I was a teenager I never doubted I would one day be a Mother, I'm a natural. I have wanted it soo bad I can't adequetly put it into words. Then at 21 I got pregnant. My PFT's were probably in the 40's at the time. Let me tell you I thought I was going to die. It wasn't morning sickness, it was all day. i couldn't keep anythig down, I was dizzy I was low on O2 and they said no tobi when you're pregnant, my Dr. put me in the hospital and rounded up every specialist he could find to come talk to me. High risk pregnancy doc, every type of pulmonologist in the hospital etc. My scenario was not good. I had a ultra sound, I saw my baby, prognosis me or the baby would be dead by my 5th month, they could maybe take the baby as a premie but the cost to me was going to be substantial. I remember when I first saw Steel Magnolias at the end I thought...well that's great, she had her baby, but you know what the baby doesn't have a Mom, and her Mom lost her baby. I thought it was actually rather selfish. I wanted that baby with my every breath but I realized it was not to be for me, i had to let go.
I haven't given up the idea of becoming a Mom but now I think more of adoption or even the option of having my sister carry my baby for me. I still wish i could do it the natural way but really the more important thing for me is the child itslef, now how it comes to be. I'm not trying to me situation is your situation. i realize while we all have the same basic disease we are all affected very differently. I know some other cfers who have had rather smooth pregnancies. I'm just sharing my experience for you to consider. i should also say I'm not one for always doing what the dr. says either, so if you are sure you want to do this, i agree you shouldn't let them stand in your way. It's just I know this is a very emotional decision, try to be as honest with yourself as possible. Talk with your partner, talk to people who've adopted or done surrogacy. The stork is a very modern bird, his delivery service utilizes more than one route.

Good luck to you.

 

[JazzysMom]

This is a personal choice, but I am giving "MY" full opinion according to my experience with my pregnancy & what I witnessed with other CFers & their pregnancy during the same time that I was pregnant. The desire to have a baby can be overwhelming. I think alot of the failure of my first marrige was around what was missing, "a baby". Although I didnt realize this at the time. As a matter of fact I didnt know what was missing until I got pregnant while with my new husband. My pregnancy wasnt planned or expected, but I was in good health so fortunately for me CF wasnt an immediate reason to worry about being a Mommy. I had a fabulous pregnancy & worked full time during the whole thing. I did develop gestational diabetes which I controlled with insulin. In my 8th month I started having hemoptysis which wasnt uncommon for me & I was surprised it too so long to rear its head. I went into the hospital for a "cleanout" as a precaution & while in it was decided due to my history & their experience with CFers for me not to go the last month of pregnancy & go thru labor. I delivered 4 weeks early by c -section. There were 6 other CFers from my clinic due with 4 weeks of each other. Some were in the same shape as me & delivered vaginally. Some had c sections. Some should never have gotten pregnant to begin with because their health was so poor. Some bounced back fine & some died. The one that was in the room next to me in the hospital is a mom who died. Her son was in NICU next to my daughter. She delivered months early & spent most of her pregnancy as well as many months after in the hospital. Her little boy was sooo tiny & will have some developmental difficulties, but all things considered is ok. Her & the baby finially got to go home together for 1 month before she passed. I realize that out of all the CFers that have been pregnant she might be the exception or the extreme. The point is that her husband & baby are left without her quite soon. The road for everyone was extremely rough & I thought it VERY selfish for her to do it. Maybe its easy for me to say since I had a good pregnancy & a healthy daughter. Although that is the reason we decided NOT to try again. I didnt want to push my luck even tho I had the ok from the doctor. The pregnancy often is the easy part. The difficult part in my eyes is the caring for the baby. I dont care how good of a support system U have.....as a Mom U will want to do more than what U might be able to handle. The doctors (most anyway) dont tell U not to get pregnant because they want to be mean or uncompassionate about your wants/desires. They are looking out for the best interest of you & your baby. Yes everyone is different. Unfortunately to find out if U are different requires U to get pregnant & see what happens. The doctors are probably basing their opinions on their experience & statistics as well as your history. If U want to risk it U should truly understand the risks to U & the baby. Your health needs to be the best it can be before, during & after. That is easier said then done. It really is, but if you are committed & your other half realizes (this is a must for the baby) the potential consequences (as couples should with any pregnancy CF or not) that at least U are making an educated decision. If U go into it uneducated that shame on U! I guess my main point here is that your decision doesnt just affect U.....should things not go well U will have a spouse left caring for a baby my himself &/or a motherless baby earlier than what would happen normally with CF. If things go well than U get to fulfill the desires that U so desperately want!

 

[JazzysMom]

This is a personal choice, but I am giving "MY" full opinion according to my experience with my pregnancy & what I witnessed with other CFers & their pregnancy during the same time that I was pregnant. The desire to have a baby can be overwhelming. I think alot of the failure of my first marrige was around what was missing, "a baby". Although I didnt realize this at the time. As a matter of fact I didnt know what was missing until I got pregnant while with my new husband. My pregnancy wasnt planned or expected, but I was in good health so fortunately for me CF wasnt an immediate reason to worry about being a Mommy. I had a fabulous pregnancy & worked full time during the whole thing. I did develop gestational diabetes which I controlled with insulin. In my 8th month I started having hemoptysis which wasnt uncommon for me & I was surprised it too so long to rear its head. I went into the hospital for a "cleanout" as a precaution & while in it was decided due to my history & their experience with CFers for me not to go the last month of pregnancy & go thru labor. I delivered 4 weeks early by c -section. There were 6 other CFers from my clinic due with 4 weeks of each other. Some were in the same shape as me & delivered vaginally. Some had c sections. Some should never have gotten pregnant to begin with because their health was so poor. Some bounced back fine & some died. The one that was in the room next to me in the hospital is a mom who died. Her son was in NICU next to my daughter. She delivered months early & spent most of her pregnancy as well as many months after in the hospital. Her little boy was sooo tiny & will have some developmental difficulties, but all things considered is ok. Her & the baby finially got to go home together for 1 month before she passed. I realize that out of all the CFers that have been pregnant she might be the exception or the extreme. The point is that her husband & baby are left without her quite soon. The road for everyone was extremely rough & I thought it VERY selfish for her to do it. Maybe its easy for me to say since I had a good pregnancy & a healthy daughter. Although that is the reason we decided NOT to try again. I didnt want to push my luck even tho I had the ok from the doctor. The pregnancy often is the easy part. The difficult part in my eyes is the caring for the baby. I dont care how good of a support system U have.....as a Mom U will want to do more than what U might be able to handle. The doctors (most anyway) dont tell U not to get pregnant because they want to be mean or uncompassionate about your wants/desires. They are looking out for the best interest of you & your baby. Yes everyone is different. Unfortunately to find out if U are different requires U to get pregnant & see what happens. The doctors are probably basing their opinions on their experience & statistics as well as your history. If U want to risk it U should truly understand the risks to U & the baby. Your health needs to be the best it can be before, during & after. That is easier said then done. It really is, but if you are committed & your other half realizes (this is a must for the baby) the potential consequences (as couples should with any pregnancy CF or not) that at least U are making an educated decision. If U go into it uneducated that shame on U! I guess my main point here is that your decision doesnt just affect U.....should things not go well U will have a spouse left caring for a baby my himself &/or a motherless baby earlier than what would happen normally with CF. If things go well than U get to fulfill the desires that U so desperately want!