Wanting to have a baby

anonymous

New member
Hi
My name is Khristina. I am a 31yr old female with CF. My husband and I are exploring our options about having children. I was wondering if any of you have had children your self while having CF. If so can we chat about it? I need advice and would love to know if and how it affected your CF. We aren't sure whether we should adopt, have a serogant or just try to get pregnant. Thanks
 

EnergyGal

New member
Hi Khristina

You can do a search on this topic. We have had many discussions on this. I would talk with your doctor first to see if you are healthy enough. They usually go by PFT's Best of luck and I hope you can have children.
 

Scarlett81

New member
Welcome!
I like what Risa said-not everything you read will apply to you. But, you can still benefit from hearing all opinions and experiences.

First off, I think its really good that you are asking around, you are doing research! Instead of blindly going into anything.

As you see from my signature, my husband and I are trying to get pregnant. I went back and forth for a long time before I decided to go ahead, stop my birth control, and start trying. I did tons of research. I went to a bunch of specialists, got second opinions, had several procedures done to test my whole body out-basically see how healthy I was. I went off of antibiotics for months, to make sure I could do without them and to test how healthy I was. My doctor and I set a goal for my PFTs, and I worked for over a year to reach it.

Basically a heck of alot of preparation!<img src="i/expressions/face-icon-small-wink.gif" border="0">

Every situation is different. I personally think that having a baby is not for all cfers. You want to be there for that child's life as long as possible. Most Cf docs, as well as the research available, will tell you that you should have a FEV1 of at least 70 to consider pregnancy. I've known of some women who had less and did fine. But I've heard of some that had 80+ and did poorly.

The overall medical opinion is, however healthy you are going into pregnancy is the main indicator of how you will be after. Are you strict with your meds, and therapies? Do you eat well/healthy? How long is it in between IVs? Things like that. Also, most docs I've talked to say, its usually not so much the pregnancy that is the issue. It's afterwards. (Im' speaking here of women that start on or above 70s PFT) You have to get your PFTs back up after. Do you have enough support around you to help with caring for a baby while you care for your body? Do you have a supportive husband/partner?

Unfortunately not one doctor can tell you what to do. Even if you have a PFT of 125, not one will tell you it is risk free to have a baby. You have to weigh it all for yourself.

There's other options out there if you don't want to get pregnant. When I asked my Cf doc 2 yrs ago, at that point she said no to me. She said my PFTS weren't high enough. But, she told me what to do, what to work on so I could re evaluate the situation in another year. At that piont she said, one way or another I will help you become a parent. Whether that it surrogacy, adoption, whatever.

Fortunately for me, all my hard work paid off and here I am.

It is such a difficult decision to reach though. My heart goes out to you.<img src="i/expressions/heart.gif" border="0">

There's lots of women on this site who have had children. At the same time, I'd encourage you to talk to women who have adopted. B/c the actual raising of the child can be just as hard on your body as the pregnancy itself. This is what every doctor has said to me, as well as lots of Cf moms too. When I went to my doc (2 yrs ago) and said I wanted to have a baby, and she suggested no, I said ok-let's talk about adoption. She said I wasn't healthy enough for that either. I really had to get my life in order!

Whatever you decide, just follow your heart. Don't write anything off until you've really thought whether or not its good for you.
 

my65roses4me

New member
<span style=" font-size: small;">Thank you so much for your advice.
You have helped me a lot. It is a very big commitment to become a
parent whether or not CF is involve. My health declined a few years
ago to the point where I couldn't do anything for myself except for
the essentials (eating bathing etc). It has since improved and is a
lot more steady. The problem for me was hemoptysis. But it has
gotten better. May I ask what your fev1 is or what you Dr wanted
you to bring it up to. I just called my Dr to see what my average
is and am still waiting for a call back. I am very in tuned with my
body and my health but have left the numbers to them. So I need to
find out what it is. We have and still are considering adoption or
serogancy. I found this sight today to get other cfers point of
view and I very much apreciate it. Thanks
 

Scarlett81

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

<span style=" font-size: small;"> May I ask what your fev1 is or what you Dr wanted
you to bring it up to. </end quote></div>


My FVC is about 99, and my FEV1, (usually the important number) is about 75. When I started at my current clinic it was 50, on good days but sometimes as low as 40. So you can see how much it has improved. My doctor is Dr. Walker at St. Vincent's CF center in New York City. They specialize in chest pt, and that's really waht brought up my numbers the most.
I love my doc b/c she didn't just tell me to go out and have a baby, she helped me make a health/lifestyle plan in order to do this successfully. We worked for a while to get my PFTs to where they should be. The Cf center also has an affiliated OBGYN that specializes in pregnant women with Cf. That makes me feel even more safe.
 

anonymous

New member
I just got a hold of my Dr's office. They say that my averages are in the 50's. I would love to know wha they have had you do to increase yours. What kind of CPT do you do? My weight is execlent so at least my nutrition is very good. Please if you dont mind give me some advice on what I can do to increase mine and then I will run it by my Dr's. Thanks
 

anonymous

New member
My pfts are in the 35-45 range... I have been thinking of having a child with my husband for a long time now. My cf doc has told me several times that if i got pregnant that ai would die. We also thought about seregacy... but how on earth would i come up with the money to afford it?!!! SO that was the huge issue of that one. My doc also thinks that i would not be able to take care of my child, but i am not that weak!!! SO i have been having issues with this subject, we are bound and determined to have a child so i was just wondering if anyone has had a baby either from pregnancy or by serogacy? thanks.. all advice welcome!!!
Cariann 21w/cf cfrd mrsa
 

karismom

New member
Hi khrystina

My daughter Kari is 25 yrs old and has cf and has a 4 yr old daughter Mayah. She was extremely ill when she became pregnant and the docs were astounded that it even happened! She has since had 2 lung tx's and is very ill now and does not have too many years left at this point. I have to say that we are all VERY grateful to have Mayah but to tell the truth that little girl has gone thru hell having a mother w/ a fatal disease. Kari LOVES <img src="i/expressions/heart.gif" border="0"> her more than life itself but is VERY guilt riden to have put her thru all of this and feels that it was very selfish to have had a child knowing how bad cf can be. Mayah is angry at Kari most times for being sick and for leaving her to be hospitalized and for just being too tired most of the time to play with her its very heartbreaking <img src="i/expressions/brokenheart.gif" border="0">. being physically challenged is hard enough to deal with and takes all the energy a person has in my opinion and you really have to weigh whats fair to another human being being in your shoes. Whatever decision you make I really wish you well God Bless You.

Karismom (Lisa)
 

karismom

New member
Hi khrystina

My daughter Kari is 25 yrs old and has cf and has a 4 yr old daughter Mayah. She was extremely ill when she became pregnant and the docs were astounded that it even happened! She has since had 2 lung tx's and is very ill now and does not have too many years left at this point. I have to say that we are all VERY grateful to have Mayah but to tell the truth that little girl has gone thru hell having a mother w/ a fatal disease. Kari LOVES <img src="i/expressions/heart.gif" border="0"> her more than life itself but is VERY guilt riden to have put her thru all of this and feels that it was very selfish to have had a child knowing how bad cf can be. Mayah is angry at Kari most times for being sick and for leaving her to be hospitalized and for just being too tired most of the time to play with her its very heartbreaking <img src="i/expressions/brokenheart.gif" border="0">. being physically challenged is hard enough to deal with and takes all the energy a person has in my opinion and you really have to weigh whats fair to another human being being in your shoes. Whatever decision you make I really wish you well God Bless You.

Karismom (Lisa)
 

karismom

New member
Hi khrystina

My daughter Kari is 25 yrs old and has cf and has a 4 yr old daughter Mayah. She was extremely ill when she became pregnant and the docs were astounded that it even happened! She has since had 2 lung tx's and is very ill now and does not have too many years left at this point. I have to say that we are all VERY grateful to have Mayah but to tell the truth that little girl has gone thru hell having a mother w/ a fatal disease. Kari LOVES <img src="i/expressions/heart.gif" border="0"> her more than life itself but is VERY guilt riden to have put her thru all of this and feels that it was very selfish to have had a child knowing how bad cf can be. Mayah is angry at Kari most times for being sick and for leaving her to be hospitalized and for just being too tired most of the time to play with her its very heartbreaking <img src="i/expressions/brokenheart.gif" border="0">. being physically challenged is hard enough to deal with and takes all the energy a person has in my opinion and you really have to weigh whats fair to another human being being in your shoes. Whatever decision you make I really wish you well God Bless You.

Karismom (Lisa)
 

anonymous

New member
my name is vicky . i am a 37 year old cf SURVIVOR.
i have a beautiful 8 year old daughter who is healthy.
i believe GOD and his final word. i had a wonderful pregnancy.
i have not had a transplant. still going on these lungs. i am waiting for a
JESUS transplant.
the doctors can not predict the future, they can only give statistics.
go with your heart, reach deep down inside of that still place and you will find
your answer.
if you are worried about dying and not being able to raise your child,,everyone
dies.. and what a better way for your life to live on than through your child.
i am available for any questions........
vb
jvhbarbour@bellsouth.net
 

anonymous

New member
my name is vicky . i am a 37 year old cf SURVIVOR.
i have a beautiful 8 year old daughter who is healthy.
i believe GOD and his final word. i had a wonderful pregnancy.
i have not had a transplant. still going on these lungs. i am waiting for a
JESUS transplant.
the doctors can not predict the future, they can only give statistics.
go with your heart, reach deep down inside of that still place and you will find
your answer.
if you are worried about dying and not being able to raise your child,,everyone
dies.. and what a better way for your life to live on than through your child.
i am available for any questions........
vb
jvhbarbour@bellsouth.net
 

anonymous

New member
my name is vicky . i am a 37 year old cf SURVIVOR.
i have a beautiful 8 year old daughter who is healthy.
i believe GOD and his final word. i had a wonderful pregnancy.
i have not had a transplant. still going on these lungs. i am waiting for a
JESUS transplant.
the doctors can not predict the future, they can only give statistics.
go with your heart, reach deep down inside of that still place and you will find
your answer.
if you are worried about dying and not being able to raise your child,,everyone
dies.. and what a better way for your life to live on than through your child.
i am available for any questions........
vb
jvhbarbour@bellsouth.net
 

karismom

New member
Dear Vicky
Your reply to my post was indeed a little harsh. I was merely telling of mine and my daughters experience and did not mean to insinuate that people w/cf do not have the right to have children. My daughter would LOVE to be a survivor, as she has the toughest spirit of ANY one I know, her body however will not allow it. And I am fairly certain that Jesus would not have allowed all this suffering if there was REALLY anything that he could do regarding cf. I am sure that you are most grateful that you haven't had a transplant, let alone TWO, because if you had you may not be having such a wonderful time being a mother to a child that you have to leave all the time to be in the hospital, or to weak to fix a pb&j for. I was just trying to say that having a disease like cf is a much bigger risk against dying young or becoming incapacitated.

karismom
 

karismom

New member
Dear Vicky
Your reply to my post was indeed a little harsh. I was merely telling of mine and my daughters experience and did not mean to insinuate that people w/cf do not have the right to have children. My daughter would LOVE to be a survivor, as she has the toughest spirit of ANY one I know, her body however will not allow it. And I am fairly certain that Jesus would not have allowed all this suffering if there was REALLY anything that he could do regarding cf. I am sure that you are most grateful that you haven't had a transplant, let alone TWO, because if you had you may not be having such a wonderful time being a mother to a child that you have to leave all the time to be in the hospital, or to weak to fix a pb&j for. I was just trying to say that having a disease like cf is a much bigger risk against dying young or becoming incapacitated.

karismom
 

karismom

New member
Dear Vicky
Your reply to my post was indeed a little harsh. I was merely telling of mine and my daughters experience and did not mean to insinuate that people w/cf do not have the right to have children. My daughter would LOVE to be a survivor, as she has the toughest spirit of ANY one I know, her body however will not allow it. And I am fairly certain that Jesus would not have allowed all this suffering if there was REALLY anything that he could do regarding cf. I am sure that you are most grateful that you haven't had a transplant, let alone TWO, because if you had you may not be having such a wonderful time being a mother to a child that you have to leave all the time to be in the hospital, or to weak to fix a pb&j for. I was just trying to say that having a disease like cf is a much bigger risk against dying young or becoming incapacitated.

karismom
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>and what a better way for your life to live on than through your child.

</end quote></div>



Wow. That's one of the more selfish statements I've ever read. Perhaps I'm interpreting you wrong, but it sounds like that if you are worried you are going to die soon, you should have a child so a part of you will live on.

There is a HUGE difference between "your life [living] on through" an ADULT child who has had the experience of environmental interaction with you and a child who you have as prat of a way to address "your [worry] about dying". Even a child who loses you when they are young when there wasn't a substantial reason to expect that you would die soon is different...

Wow.
 
Top