Considering a second child...What did you do?

[JennyCoulon]

We actually knew right after our oldest who is now 11 was born that we would want more children. Mason was born 6 weeks early with meconium illias, had surgery to fix his ruptured bowel 4 hrs after birth. He has a calostomy for about 2 months before his bowel was reconnected. He spend his first Christmas in the hospital and a total of 2.5 months before he was able to come home. He came home with a central line and on a feeding tube.
I gave birth to Tucker who is now 6 without all of the complications that we had with Mason. Tucker was also diagnosed with CF at birth but the cases were very different. Both of them have normal lung function but have trouble gaining weight. When Mason was 5 he got his g-button placed due to lack of weight gain. They are now talking g-button possibly for Tucker due to the same thing.
After Tucker was born we were on the fence about more children. We knew that we would love to have more but we just didn't want to push our luck. We had two boys with CF when the chances are 1 in 4. I found out about a year ago that I was pregnant again. I was concerned about the CF issue but figured that I would leave it in God's hands. Our daughter Peyton was born March 1 of this year and tested negative for CF. It is different to have a child that doesn't have CF b/c we are so used to the lifestyle of having 2 children with it.
It is something that you have to decide. I never thought about having another child any other way other than natural. I truly believe that God only gives you what he knews you can handle. Maybe just see what happens and take it one day at a time. It was a good thing for us that Tucker and Peyton were surprises so we didn't have to decide if we truly wanted to make that tough decision. For us it worked out. We are offically done with children now. It is tough to have two children with CF but it is also expensive to have 3 children. It is a decision that you and your husband have to make together. Good luck

 

[JennyCoulon]

We actually knew right after our oldest who is now 11 was born that we would want more children. Mason was born 6 weeks early with meconium illias, had surgery to fix his ruptured bowel 4 hrs after birth. He has a calostomy for about 2 months before his bowel was reconnected. He spend his first Christmas in the hospital and a total of 2.5 months before he was able to come home. He came home with a central line and on a feeding tube.
I gave birth to Tucker who is now 6 without all of the complications that we had with Mason. Tucker was also diagnosed with CF at birth but the cases were very different. Both of them have normal lung function but have trouble gaining weight. When Mason was 5 he got his g-button placed due to lack of weight gain. They are now talking g-button possibly for Tucker due to the same thing.
After Tucker was born we were on the fence about more children. We knew that we would love to have more but we just didn't want to push our luck. We had two boys with CF when the chances are 1 in 4. I found out about a year ago that I was pregnant again. I was concerned about the CF issue but figured that I would leave it in God's hands. Our daughter Peyton was born March 1 of this year and tested negative for CF. It is different to have a child that doesn't have CF b/c we are so used to the lifestyle of having 2 children with it.
It is something that you have to decide. I never thought about having another child any other way other than natural. I truly believe that God only gives you what he knews you can handle. Maybe just see what happens and take it one day at a time. It was a good thing for us that Tucker and Peyton were surprises so we didn't have to decide if we truly wanted to make that tough decision. For us it worked out. We are offically done with children now. It is tough to have two children with CF but it is also expensive to have 3 children. It is a decision that you and your husband have to make together. Good luck

 

[JennyCoulon]

<p>We actually knew right after our oldest who is now 11 was born that we would want more children. Mason was born 6 weeks early with meconium illias, had surgery to fix his ruptured bowel 4 hrs after birth. He has a calostomy for about 2 months before his bowel was reconnected. He spend his first Christmas in the hospital and a total of 2.5 months before he was able to come home. He came home with a central line and on a feeding tube.
<p>I gave birth to Tucker who is now 6 without all of the complications that we had with Mason. Tucker was also diagnosed with CF at birth but the cases were very different. Both of them have normal lung function but have trouble gaining weight. When Mason was 5 he got his g-button placed due to lack of weight gain. They are now talking g-button possibly for Tucker due to the same thing.
<p>After Tucker was born we were on the fence about more children. We knew that we would love to have more but we just didn't want to push our luck. We had two boys with CF when the chances are 1 in 4. I found out about a year ago that I was pregnant again. I was concerned about the CF issue but figured that I would leave it in God's hands. Our daughter Peyton was born March 1 of this year and tested negative for CF. It is different to have a child that doesn't have CF b/c we are so used to the lifestyle of having 2 children with it.
<p>It is something that you have to decide. I never thought about having another child any other way other than natural. I truly believe that God only gives you what he knews you can handle. Maybe just see what happens and take it one day at a time. It was a good thing for us that Tucker and Peyton were surprises so we didn't have to decide if we truly wanted to make that tough decision. For us it worked out. We are offically done with children now. It is tough to have two children with CF but it is also expensive to have 3 children. It is a decision that you and your husband have to make together. Good luck

 

[AleksandraKaczynska]

Well - we also took a chance and Jaonna has a beautifull sister - no cf.
Abortion here is illegal - you can go to jail for it and also most other ways (apart from natural) of getting pregnant are either illegal, not approved by the church or extremely costly.
It was a decision made by us as not to allow Asia face life alone - with just her parents.
It was a tough decision and waiting for the gentic test after giving birth was also a difficult time but all turned out fine.
It's a hard question and many questions you have to ask yourself. But cf is not the only sickness and I guess it' s down to believing in God or in luck.

 

[AleksandraKaczynska]

Well - we also took a chance and Jaonna has a beautifull sister - no cf.
Abortion here is illegal - you can go to jail for it and also most other ways (apart from natural) of getting pregnant are either illegal, not approved by the church or extremely costly.
It was a decision made by us as not to allow Asia face life alone - with just her parents.
It was a tough decision and waiting for the gentic test after giving birth was also a difficult time but all turned out fine.
It's a hard question and many questions you have to ask yourself. But cf is not the only sickness and I guess it' s down to believing in God or in luck.

 

[AleksandraKaczynska]

Well - we also took a chance and Jaonna has a beautifull sister - no cf.
<br />Abortion here is illegal - you can go to jail for it and also most other ways (apart from natural) of getting pregnant are either illegal, not approved by the church or extremely costly.
<br />It was a decision made by us as not to allow Asia face life alone - with just her parents.
<br />It was a tough decision and waiting for the gentic test after giving birth was also a difficult time but all turned out fine.
<br />It's a hard question and many questions you have to ask yourself. But cf is not the only sickness and I guess it' s down to believing in God or in luck.

 

[KAC1210]

This is definatly a tough subject..In the end it is your decision.  We found out we were both carriers when we were pregnant with our first son.  He is now 4 with no CF.  I can honestly say that we didnt give the fact that we were both carriers much thought.  We knew the chances but were naive.  We didn't know much about CF or about raising a child with CF.  I can remember saying "imagine all the things that people are carriers for that they dont know about."  We got pregnant with our second son and everything was fine..until two days after we were released from the hospital.  We had to take him back to repeat his newborn screen cause his irt was high.  I remember his pediatrician saying that it didnt' necessarily mean anything...its just a screen.  But i knew something was wrong.  It was high again and we went for a sweat test.  The doc called and said he had CF.  I remember it like it was yesterday.  The amount of guilt that I felt is unexplainable.  I still to this day tell Trevor I am sorry during his treatments. 
CF has changed our life..some for the good, makes you appreciate everything a little more and get your priorities straight.  I would not take back that aspect of it.  I wouldnt take Trevor back, but would do anything to take CF away from him.  I can honestly say that if our first child had CF we would not have had anymore.  We always said we wanted two kids so maybe we could have tried adoption.  I just feel like its such a risk.. Trevor is doing well for the most part.  Its just the everyday treatments and constant worry.  As of right now there will ever be a day that Trevor will had to deal with this.  The cross contamination things scares me too.  You can't have two kids and have to keep them apart..its just not fair.
In the end it is your family's dicision to make, I hope you can make one that you will be happy with..Best wishes! 
 

 

[KAC1210]

This is definatly a tough subject..In the end it is your decision. We found out we were both carriers when we were pregnant with our first son. He is now 4 with no CF. I can honestly say that we didnt give the fact that we were both carriers much thought. We knew the chances but were naive. We didn't know much about CF or about raising a child with CF. I can remember saying "imagine all the things that people are carriers for that they dont know about." We got pregnant with our second son and everything was fine..until two days after we were released from the hospital. We had to take him back to repeat his newborn screen cause his irt was high. I remember his pediatrician saying that it didnt' necessarily mean anything...its just a screen. But i knew something was wrong. It was high again and we went for a sweat test. The doc called and said he had CF. I remember it like it was yesterday. The amount of guilt that I felt is unexplainable. I still to this day tell Trevor I am sorry during his treatments.
CF has changed our life..some for the good, makes you appreciate everything a little more and get your priorities straight. I would not take back that aspect of it. I wouldnt take Trevor back, but would do anything to take CF away from him. I can honestly say that if our first child had CF we would not have had anymore. We always said we wanted two kids so maybe we could have tried adoption. I just feel like its such a risk.. Trevor is doing well for the most part. Its just the everyday treatments and constant worry. As of right now there will ever be a day that Trevor will had to deal with this. The cross contamination things scares me too. You can't have two kids and have to keep them apart..its just not fair.
In the end it is your family's dicision to make, I hopeyou can make one thatyou will behappy with..Bestwishes!

 

[KAC1210]

<p>This is definatly a tough subject..In the end it is your decision. We found out we were both carriers when we were pregnant with our first son. He is now 4 with no CF. I can honestly say that we didnt give the fact that we were both carriers much thought. We knew the chances but were naive. We didn't know much about CF or about raising a child with CF. I can remember saying "imagine all the things that people are carriers for that they dont know about." We got pregnant with our second son and everything was fine..until two days after we were released from the hospital. We had to take him back to repeat his newborn screen cause his irt was high. I remember his pediatrician saying that it didnt' necessarily mean anything...its just a screen. But i knew something was wrong. It was high again and we went for a sweat test. The doc called and said he had CF. I remember it like it was yesterday. The amount of guilt that I felt is unexplainable. I still to this day tell Trevor I am sorry during his treatments.
<p>CF has changed our life..some for the good, makes you appreciate everything a little more and get your priorities straight. I would not take back that aspect of it. I wouldnt take Trevor back, but would do anything to take CF away from him. I can honestly say that if our first child had CF we would not have had anymore. We always said we wanted two kids so maybe we could have tried adoption. I just feel like its such a risk.. Trevor is doing well for the most part. Its just the everyday treatments and constant worry. As of right now there will ever be a day that Trevor will had to deal with this. The cross contamination things scares me too. You can't have two kids and have to keep them apart..its just not fair.
<p>In the end it is your family's dicision to make, I hopeyou can make one thatyou will behappy with..Bestwishes!
<p>

 

[Ratatosk]

DH and I waited until we were older to start having children -- late 30s. Originally planned to have 2. DS was born with MI and spent almost 2 months in the NICU. We weren't willing to risk taking a chance and just having another child, as we knew of several people who have more than one child wcf. As for IVF/PGD, we thought about it; however, with our ages, not sure it would even work, closest clinic offering it was over 250 miles away, we decided we'd much rather set aside the money for DS' future.

 

[Ratatosk]

DH and I waited until we were older to start having children -- late 30s. Originally planned to have 2. DS was born with MI and spent almost 2 months in the NICU. We weren't willing to risk taking a chance and just having another child, as we knew of several people who have more than one child wcf. As for IVF/PGD, we thought about it; however, with our ages, not sure it would even work, closest clinic offering it was over 250 miles away, we decided we'd much rather set aside the money for DS' future.

 

[Ratatosk]

DH and I waited until we were older to start having children -- late 30s. Originally planned to have 2. DS was born with MI and spent almost 2 months in the NICU. We weren't willing to risk taking a chance and just having another child, as we knew of several people who have more than one child wcf. As for IVF/PGD, we thought about it; however, with our ages, not sure it would even work, closest clinic offering it was over 250 miles away, we decided we'd much rather set aside the money for DS' future.

 

[hmw]

This is a very very delicate issue and most people have pretty strong feelings about it. Everyone has to go with what they personally feel is right for their family... I'll just share some thoughts of my own after reading through the many posts here.

My version of the 'everything happens for a reason' is... cf is a devastating genetic disease and there is a 25% chance it will happen when two carriers conceive a baby. That's a pretty clear 'reason' for it to happen in my book. Emily wasn't 'supposed' to have CF any more than her brothers were 'supposed' to be spared CF. It was due to genetic imperfection, not someone deciding she should have the disease because she needed it in order to fulfill some higher purpose or her true potential or whatever.

The argument of 'we won't be given a trial that is more than we can handle' is SO often used in the argument supporting having another child despite knowing the risks once we have one with cf or know we are carriers. However, there is a flip side to this that has to be given attention if that is going to be your reason for making this choice. If one were to decide, after considering all aspects of the situation- NOT to follow the path of having more children, even if this was a difficult and painful choice- if you believe that you won't be given a trial you cannot endure, <i>you would have strength to get through this too.</i>

I also believe that we have been given the gifts of intelligence and common sense... and shouldn't waste them. Just as we would use logic, forethought and consider all the options when making any other major life decision- emotion should not be the driving force in making this choice- there is so much at stake. I agree so much with other posts here mentioning the reality that in today's world, financial and logistical challenges are huge. The issue of healthcare cannot be underestimated. The economy cannot be underestimated. Considering another child even without chronic illness on the table is a big undertaking given those factors right now... nevermind adding the possibility of something like CF. Think it all through. We can never be completely sure of anything, but this is one of the bigger decisions you will ever make.

If we knew then what we know now, and gone another route to parenthood 15yrs ago, I am sure I would have ended up saying the same thing I say now about my kids, that I couldn't imagine life without them and would not change a thing.

 

[hmw]

This is a very very delicate issue and most people have pretty strong feelings about it. Everyone has to go with what they personally feel is right for their family... I'll just share some thoughts of my own after reading through the many posts here.

My version of the 'everything happens for a reason' is... cf is a devastating genetic disease and there is a 25% chance it will happen when two carriers conceive a baby. That's a pretty clear 'reason' for it to happen in my book. Emily wasn't 'supposed' to have CF any more than her brothers were 'supposed' to be spared CF. It was due to genetic imperfection, not someone deciding she should have the disease because she needed it in order to fulfill some higher purpose or her true potential or whatever.

The argument of 'we won't be given a trial that is more than we can handle' is SO often used in the argument supporting having another child despite knowing the risks once we have one with cf or know we are carriers. However, there is a flip side to this that has to be given attention if that is going to be your reason for making this choice. If one were to decide, after considering all aspects of the situation- NOT to follow the path of having more children, even if this was a difficult and painful choice- if you believe that you won't be given a trial you cannot endure, <i>you would have strength to get through this too.</i>

I also believe that we have been given the gifts of intelligence and common sense... and shouldn't waste them. Just as we would use logic, forethought and consider all the options when making any other major life decision- emotion should not be the driving force in making this choice- there is so much at stake. I agree so much with other posts here mentioning the reality that in today's world, financial and logistical challenges are huge. The issue of healthcare cannot be underestimated. The economy cannot be underestimated. Considering another child even without chronic illness on the table is a big undertaking given those factors right now... nevermind adding the possibility of something like CF. Think it all through. We can never be completely sure of anything, but this is one of the bigger decisions you will ever make.

If we knew then what we know now, and gone another route to parenthood 15yrs ago, I am sure I would have ended up saying the same thing I say now about my kids, that I couldn't imagine life without them and would not change a thing.

 

[hmw]

This is a very very delicate issue and most people have pretty strong feelings about it. Everyone has to go with what they personally feel is right for their family... I'll just share some thoughts of my own after reading through the many posts here.
<br />
<br />My version of the 'everything happens for a reason' is... cf is a devastating genetic disease and there is a 25% chance it will happen when two carriers conceive a baby. That's a pretty clear 'reason' for it to happen in my book. Emily wasn't 'supposed' to have CF any more than her brothers were 'supposed' to be spared CF. It was due to genetic imperfection, not someone deciding she should have the disease because she needed it in order to fulfill some higher purpose or her true potential or whatever.
<br />
<br />The argument of 'we won't be given a trial that is more than we can handle' is SO often used in the argument supporting having another child despite knowing the risks once we have one with cf or know we are carriers. However, there is a flip side to this that has to be given attention if that is going to be your reason for making this choice. If one were to decide, after considering all aspects of the situation- NOT to follow the path of having more children, even if this was a difficult and painful choice- if you believe that you won't be given a trial you cannot endure, <i>you would have strength to get through this too.</i>
<br />
<br />I also believe that we have been given the gifts of intelligence and common sense... and shouldn't waste them. Just as we would use logic, forethought and consider all the options when making any other major life decision- emotion should not be the driving force in making this choice- there is so much at stake. I agree so much with other posts here mentioning the reality that in today's world, financial and logistical challenges are huge. The issue of healthcare cannot be underestimated. The economy cannot be underestimated. Considering another child even without chronic illness on the table is a big undertaking given those factors right now... nevermind adding the possibility of something like CF. Think it all through. We can never be completely sure of anything, but this is one of the bigger decisions you will ever make.
<br />
<br />If we knew then what we know now, and gone another route to parenthood 15yrs ago, I am sure I would have ended up saying the same thing I say now about my kids, that I couldn't imagine life without them and would not change a thing.

 

[2005CFmom]

Harriett,

Love your post! These are my sentiments exactly, but you expressed it much more tactfully than I would be able to.

 

[2005CFmom]

Harriett,

Love your post! These are my sentiments exactly, but you expressed it much more tactfully than I would be able to.

 

[2005CFmom]

Harriett,
<br />
<br />Love your post! These are my sentiments exactly, but you expressed it much more tactfully than I would be able to.

 

[scheesman]

I have a big problem with ( leave it in gods hands ). Don't get me wrong I believe in god, but god doesn't kill people. People kill people. God doesn't pay doc bills either. This isn't intended to piss people off but it is reality. Don't just think about today but also when our children will be grown-up and have the burden of their health on top of the expense of it. Ya I'm hopeful of wonder drugs in the future but the med companies just ain't gonna give them away. I just don't think it is worth the risk. My daughter is 4 now but much of her childhood was lost because of that feeding tube, treatments, therapy and doc visits. I just don't understand how parents take that chance just because they WANT another child. Ask any CFer I'm sure they WANT a normal life.

 

[scheesman]

I have a big problem with ( leave it in gods hands ). Don't get me wrong I believe in god, but god doesn't kill people. People kill people. God doesn't pay doc bills either. This isn't intended to piss people off but it is reality. Don't just think about today but also when our children will be grown-up and have the burden of their health on top of the expense of it. Ya I'm hopeful of wonder drugs in the future but the med companies just ain't gonna give them away. I just don't think it is worth the risk. My daughter is 4 now but much of her childhood was lost because of that feeding tube, treatments, therapy and doc visits. I just don't understand how parents take that chance just because they WANT another child. Ask any CFer I'm sure they WANT a normal life.