Prenatal CF diagnosi

[bwilliams395]

Hi, my name is Becca and we just found out that our unborn daughter has CF (delta F508, if that matters). We've had this news a little over a week so are adjusting. This seems to be a great site and I'm hoping some of you can help us. We're feeling a little helpless right now since there's not a whole lot we can do until she is born other than educate ourselves and deal with our emotions. Although I still appreicate knowing now so we have time to process this and prepare. We are scheduled to meet with a doctor from the CF care center in our area in the next week or so, but I'm having a hard time waiting.
What are some things (if any) we can do now to prepare? Are there any environmental changes we need to make to our home?
We have a 4 and almost 3 year old who are carriers, what is the best way to prepare them--or do we just wait and see? As I understand all cases of CF are different and we won't know the severity of our daughter's case until she is born.
Do we need to prepare her bedroom any differently now that we know she has CF? (i.e. special paints, carpeting, bedding, etc.?)
Is there any other information you wish you would have known ahead of time?
Thanks in advance for taking your time to answer our questions.

 

[bwilliams395]

Hi, my name is Becca and we just found out that our unborn daughter has CF (delta F508, if that matters). We've had this news a little over a week so are adjusting. This seems to be a great site and I'm hoping some of you can help us. We're feeling a little helpless right now since there's not a whole lot we can do until she is born other than educate ourselves and deal with our emotions. Although I still appreicate knowing now so we have time to process this and prepare. We are scheduled to meet with a doctor from the CF care center in our area in the next week or so, but I'm having a hard time waiting.
What are some things (if any) we can do now to prepare? Are there any environmental changes we need to make to our home?
We have a 4 and almost 3 year old who are carriers, what is the best way to prepare them--or do we just wait and see? As I understand all cases of CF are different and we won't know the severity of our daughter's case until she is born.
Do we need to prepare her bedroom any differently now that we know she has CF? (i.e. special paints, carpeting, bedding, etc.?)
Is there any other information you wish you would have known ahead of time?
Thanks in advance for taking your time to answer our questions.

 

[bwilliams395]

Hi, my name is Becca and we just found out that our unborn daughter has CF (delta F508, if that matters). We've had this news a little over a week so are adjusting. This seems to be a great site and I'm hoping some of you can help us. We're feeling a little helpless right now since there's not a whole lot we can do until she is born other than educate ourselves and deal with our emotions. Although I still appreicate knowing now so we have time to process this and prepare. We are scheduled to meet with a doctor from the CF care center in our area in the next week or so, but I'm having a hard time waiting.
What are some things (if any) we can do now to prepare? Are there any environmental changes we need to make to our home?
We have a 4 and almost 3 year old who are carriers, what is the best way to prepare them--or do we just wait and see? As I understand all cases of CF are different and we won't know the severity of our daughter's case until she is born.
Do we need to prepare her bedroom any differently now that we know she has CF? (i.e. special paints, carpeting, bedding, etc.?)
Is there any other information you wish you would have known ahead of time?
Thanks in advance for taking your time to answer our questions.

 

[bwilliams395]

Hi, my name is Becca and we just found out that our unborn daughter has CF (delta F508, if that matters). We've had this news a little over a week so are adjusting. This seems to be a great site and I'm hoping some of you can help us. We're feeling a little helpless right now since there's not a whole lot we can do until she is born other than educate ourselves and deal with our emotions. Although I still appreicate knowing now so we have time to process this and prepare. We are scheduled to meet with a doctor from the CF care center in our area in the next week or so, but I'm having a hard time waiting.
What are some things (if any) we can do now to prepare? Are there any environmental changes we need to make to our home?
We have a 4 and almost 3 year old who are carriers, what is the best way to prepare them--or do we just wait and see? As I understand all cases of CF are different and we won't know the severity of our daughter's case until she is born.
Do we need to prepare her bedroom any differently now that we know she has CF? (i.e. special paints, carpeting, bedding, etc.?)
Is there any other information you wish you would have known ahead of time?
Thanks in advance for taking your time to answer our questions.

 

[bwilliams395]

Hi, my name is Becca and we just found out that our unborn daughter has CF (delta F508, if that matters). We've had this news a little over a week so are adjusting. This seems to be a great site and I'm hoping some of you can help us. We're feeling a little helpless right now since there's not a whole lot we can do until she is born other than educate ourselves and deal with our emotions. Although I still appreicate knowing now so we have time to process this and prepare. We are scheduled to meet with a doctor from the CF care center in our area in the next week or so, but I'm having a hard time waiting.
<br />What are some things (if any) we can do now to prepare? Are there any environmental changes we need to make to our home?
<br />We have a 4 and almost 3 year old who are carriers, what is the best way to prepare them--or do we just wait and see? As I understand all cases of CF are different and we won't know the severity of our daughter's case until she is born.
<br />Do we need to prepare her bedroom any differently now that we know she has CF? (i.e. special paints, carpeting, bedding, etc.?)
<br />Is there any other information you wish you would have known ahead of time?
<br />Thanks in advance for taking your time to answer our questions.

 

[JazzysMom]

Its a lot to take in right now so for now I will welcome you, but promise to come back to answer your questions!!

 

[JazzysMom]

Its a lot to take in right now so for now I will welcome you, but promise to come back to answer your questions!!

 

[JazzysMom]

Its a lot to take in right now so for now I will welcome you, but promise to come back to answer your questions!!

 

[JazzysMom]

Its a lot to take in right now so for now I will welcome you, but promise to come back to answer your questions!!

 

[JazzysMom]

Its a lot to take in right now so for now I will welcome you, but promise to come back to answer your questions!!

 

[letefk]

First of all, welcome to the site -- although I am sorry about the news that brings you here. It sounds like you are doing some of the most important things, in that you are learning more about what it will be like to live with CF and you are starting the process of coping with the news. That second part takes time; it is a form of grieving.

Like you say, you can't tell what you will be dealing with until you see how the disease will express. My girls are both D508, but they are pancreatic sufficient, so we deal mostly with the lung issues. For us, it was really important to get some very good air purifiers in the bedrooms. We thought about pulling out the carpets in the bedrooms, but they don't seem to be as much of a trigger, so we haven't done that yet. Some of this is trial and error to see what seems to help. There are some things that you do have to wait and see.

We found that we needed less environmental changes than lifestyle ones. It took time to figure out a new normal after both our girls were diagnosed (1 and 4 years old at dx). These changes will impact the whole family. They impact lots of decisions -- from work issues to vacations and travel. For us, the most important thing has been creating a support network of family and friends that can help us. At first, we were resistant to letting others handle medications and treatments. A few years in, I started training others, though. I created handouts and checklists so that others could help -- especially with longer stretches, when we had one in the hospital and needed someone else to watch her sister.

Since both of our girls have CF, I can't say much about how to prepare the other kids; hopefully others can. But I can say that for us, the most important thing has been to create "our own normal" -- a routine that includes CF care as just another part of our day (at least on the good days!) The amazing thing is that you do adjust to the new reality.

 

[letefk]

First of all, welcome to the site -- although I am sorry about the news that brings you here. It sounds like you are doing some of the most important things, in that you are learning more about what it will be like to live with CF and you are starting the process of coping with the news. That second part takes time; it is a form of grieving.

Like you say, you can't tell what you will be dealing with until you see how the disease will express. My girls are both D508, but they are pancreatic sufficient, so we deal mostly with the lung issues. For us, it was really important to get some very good air purifiers in the bedrooms. We thought about pulling out the carpets in the bedrooms, but they don't seem to be as much of a trigger, so we haven't done that yet. Some of this is trial and error to see what seems to help. There are some things that you do have to wait and see.

We found that we needed less environmental changes than lifestyle ones. It took time to figure out a new normal after both our girls were diagnosed (1 and 4 years old at dx). These changes will impact the whole family. They impact lots of decisions -- from work issues to vacations and travel. For us, the most important thing has been creating a support network of family and friends that can help us. At first, we were resistant to letting others handle medications and treatments. A few years in, I started training others, though. I created handouts and checklists so that others could help -- especially with longer stretches, when we had one in the hospital and needed someone else to watch her sister.

Since both of our girls have CF, I can't say much about how to prepare the other kids; hopefully others can. But I can say that for us, the most important thing has been to create "our own normal" -- a routine that includes CF care as just another part of our day (at least on the good days!) The amazing thing is that you do adjust to the new reality.

 

[letefk]

First of all, welcome to the site -- although I am sorry about the news that brings you here. It sounds like you are doing some of the most important things, in that you are learning more about what it will be like to live with CF and you are starting the process of coping with the news. That second part takes time; it is a form of grieving.

Like you say, you can't tell what you will be dealing with until you see how the disease will express. My girls are both D508, but they are pancreatic sufficient, so we deal mostly with the lung issues. For us, it was really important to get some very good air purifiers in the bedrooms. We thought about pulling out the carpets in the bedrooms, but they don't seem to be as much of a trigger, so we haven't done that yet. Some of this is trial and error to see what seems to help. There are some things that you do have to wait and see.

We found that we needed less environmental changes than lifestyle ones. It took time to figure out a new normal after both our girls were diagnosed (1 and 4 years old at dx). These changes will impact the whole family. They impact lots of decisions -- from work issues to vacations and travel. For us, the most important thing has been creating a support network of family and friends that can help us. At first, we were resistant to letting others handle medications and treatments. A few years in, I started training others, though. I created handouts and checklists so that others could help -- especially with longer stretches, when we had one in the hospital and needed someone else to watch her sister.

Since both of our girls have CF, I can't say much about how to prepare the other kids; hopefully others can. But I can say that for us, the most important thing has been to create "our own normal" -- a routine that includes CF care as just another part of our day (at least on the good days!) The amazing thing is that you do adjust to the new reality.

 

[letefk]

First of all, welcome to the site -- although I am sorry about the news that brings you here. It sounds like you are doing some of the most important things, in that you are learning more about what it will be like to live with CF and you are starting the process of coping with the news. That second part takes time; it is a form of grieving.

Like you say, you can't tell what you will be dealing with until you see how the disease will express. My girls are both D508, but they are pancreatic sufficient, so we deal mostly with the lung issues. For us, it was really important to get some very good air purifiers in the bedrooms. We thought about pulling out the carpets in the bedrooms, but they don't seem to be as much of a trigger, so we haven't done that yet. Some of this is trial and error to see what seems to help. There are some things that you do have to wait and see.

We found that we needed less environmental changes than lifestyle ones. It took time to figure out a new normal after both our girls were diagnosed (1 and 4 years old at dx). These changes will impact the whole family. They impact lots of decisions -- from work issues to vacations and travel. For us, the most important thing has been creating a support network of family and friends that can help us. At first, we were resistant to letting others handle medications and treatments. A few years in, I started training others, though. I created handouts and checklists so that others could help -- especially with longer stretches, when we had one in the hospital and needed someone else to watch her sister.

Since both of our girls have CF, I can't say much about how to prepare the other kids; hopefully others can. But I can say that for us, the most important thing has been to create "our own normal" -- a routine that includes CF care as just another part of our day (at least on the good days!) The amazing thing is that you do adjust to the new reality.

 

[letefk]

First of all, welcome to the site -- although I am sorry about the news that brings you here. It sounds like you are doing some of the most important things, in that you are learning more about what it will be like to live with CF and you are starting the process of coping with the news. That second part takes time; it is a form of grieving.
<br />
<br />Like you say, you can't tell what you will be dealing with until you see how the disease will express. My girls are both D508, but they are pancreatic sufficient, so we deal mostly with the lung issues. For us, it was really important to get some very good air purifiers in the bedrooms. We thought about pulling out the carpets in the bedrooms, but they don't seem to be as much of a trigger, so we haven't done that yet. Some of this is trial and error to see what seems to help. There are some things that you do have to wait and see.
<br />
<br />We found that we needed less environmental changes than lifestyle ones. It took time to figure out a new normal after both our girls were diagnosed (1 and 4 years old at dx). These changes will impact the whole family. They impact lots of decisions -- from work issues to vacations and travel. For us, the most important thing has been creating a support network of family and friends that can help us. At first, we were resistant to letting others handle medications and treatments. A few years in, I started training others, though. I created handouts and checklists so that others could help -- especially with longer stretches, when we had one in the hospital and needed someone else to watch her sister.
<br />
<br />Since both of our girls have CF, I can't say much about how to prepare the other kids; hopefully others can. But I can say that for us, the most important thing has been to create "our own normal" -- a routine that includes CF care as just another part of our day (at least on the good days!) The amazing thing is that you do adjust to the new reality.

 

[sdelorenzo]

Welcome! Congratulations about the baby you are expecting first of all. I know it can be challenging to find out about cf before the baby is born. I already had a daughter with cf when I found out my 2nd was going to have cf while I was pregnant with him. While I knew what a great life my son was going to have, it still was hard accepting his diagnosis since the only thing I knew about him was his diagnosis.

I think the first thing is for you to realize is how "perfect" your daughter will be. What I mean by that is that there will just be small differences you will notice from your other children (maybe a few more dirty diapers). She will probably be started on enzymes to help her digest her foods. Most kids who have delta 508 are pancreatic insufficient and need enzymes. You will also need a few high level ultrasounds to monitor her bowels. I think around 10% of those with cf are born with intestinal blockage. Ultrasounds are good at diagnosing that problem.

Regarding how to prepare your home. We choose to have hard woods in our house, but honestly I am not sure how much good eliminating dust does in helping one with cf, it just seems "to feel" like we are doing something. My kids have done really well. They both are delta 508 and have done everything like their friends (preschool, playgrounds, sports, etc). You would never know they have cf. My best advice to you is to try and keep your lives as normal as you did with your sons. Just with extra precautions like using hand sanitizer. There is no way to completely protect her from colds and bacteria. You can try, but it is just inevitable. One of my kids dr said cf kids have higher immunities and I believe it. My kids rarely come down with the colds and viruses that their friends do thankfully. When they do, they get over it with just some extra respiratory treatments. Now there have been one or two times that it did turn into pneumonia and they needed IV antibiotics to get over the virus, but for the most part kids with cf can over a cold just like their siblings.

I imagine the appt with the cf dr will be a bit overwhelming. Take paper to write down information you are given. Try not to focus too much on the cf diagnosis and just focus on what a precious baby you will be expecting.
If you want send me an e-mail to sdelorenzo@sbcglobal.net and I can send you a slide show of my kids. Hopefully you will be able to see what great lives they lives dispite their diagnosis. Take care.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant one month carrier

 

[sdelorenzo]

Welcome! Congratulations about the baby you are expecting first of all. I know it can be challenging to find out about cf before the baby is born. I already had a daughter with cf when I found out my 2nd was going to have cf while I was pregnant with him. While I knew what a great life my son was going to have, it still was hard accepting his diagnosis since the only thing I knew about him was his diagnosis.

I think the first thing is for you to realize is how "perfect" your daughter will be. What I mean by that is that there will just be small differences you will notice from your other children (maybe a few more dirty diapers). She will probably be started on enzymes to help her digest her foods. Most kids who have delta 508 are pancreatic insufficient and need enzymes. You will also need a few high level ultrasounds to monitor her bowels. I think around 10% of those with cf are born with intestinal blockage. Ultrasounds are good at diagnosing that problem.

Regarding how to prepare your home. We choose to have hard woods in our house, but honestly I am not sure how much good eliminating dust does in helping one with cf, it just seems "to feel" like we are doing something. My kids have done really well. They both are delta 508 and have done everything like their friends (preschool, playgrounds, sports, etc). You would never know they have cf. My best advice to you is to try and keep your lives as normal as you did with your sons. Just with extra precautions like using hand sanitizer. There is no way to completely protect her from colds and bacteria. You can try, but it is just inevitable. One of my kids dr said cf kids have higher immunities and I believe it. My kids rarely come down with the colds and viruses that their friends do thankfully. When they do, they get over it with just some extra respiratory treatments. Now there have been one or two times that it did turn into pneumonia and they needed IV antibiotics to get over the virus, but for the most part kids with cf can over a cold just like their siblings.

I imagine the appt with the cf dr will be a bit overwhelming. Take paper to write down information you are given. Try not to focus too much on the cf diagnosis and just focus on what a precious baby you will be expecting.
If you want send me an e-mail to sdelorenzo@sbcglobal.net and I can send you a slide show of my kids. Hopefully you will be able to see what great lives they lives dispite their diagnosis. Take care.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant one month carrier

 

[sdelorenzo]

Welcome! Congratulations about the baby you are expecting first of all. I know it can be challenging to find out about cf before the baby is born. I already had a daughter with cf when I found out my 2nd was going to have cf while I was pregnant with him. While I knew what a great life my son was going to have, it still was hard accepting his diagnosis since the only thing I knew about him was his diagnosis.

I think the first thing is for you to realize is how "perfect" your daughter will be. What I mean by that is that there will just be small differences you will notice from your other children (maybe a few more dirty diapers). She will probably be started on enzymes to help her digest her foods. Most kids who have delta 508 are pancreatic insufficient and need enzymes. You will also need a few high level ultrasounds to monitor her bowels. I think around 10% of those with cf are born with intestinal blockage. Ultrasounds are good at diagnosing that problem.

Regarding how to prepare your home. We choose to have hard woods in our house, but honestly I am not sure how much good eliminating dust does in helping one with cf, it just seems "to feel" like we are doing something. My kids have done really well. They both are delta 508 and have done everything like their friends (preschool, playgrounds, sports, etc). You would never know they have cf. My best advice to you is to try and keep your lives as normal as you did with your sons. Just with extra precautions like using hand sanitizer. There is no way to completely protect her from colds and bacteria. You can try, but it is just inevitable. One of my kids dr said cf kids have higher immunities and I believe it. My kids rarely come down with the colds and viruses that their friends do thankfully. When they do, they get over it with just some extra respiratory treatments. Now there have been one or two times that it did turn into pneumonia and they needed IV antibiotics to get over the virus, but for the most part kids with cf can over a cold just like their siblings.

I imagine the appt with the cf dr will be a bit overwhelming. Take paper to write down information you are given. Try not to focus too much on the cf diagnosis and just focus on what a precious baby you will be expecting.
If you want send me an e-mail to sdelorenzo@sbcglobal.net and I can send you a slide show of my kids. Hopefully you will be able to see what great lives they lives dispite their diagnosis. Take care.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant one month carrier

 

[sdelorenzo]

Welcome! Congratulations about the baby you are expecting first of all. I know it can be challenging to find out about cf before the baby is born. I already had a daughter with cf when I found out my 2nd was going to have cf while I was pregnant with him. While I knew what a great life my son was going to have, it still was hard accepting his diagnosis since the only thing I knew about him was his diagnosis.

I think the first thing is for you to realize is how "perfect" your daughter will be. What I mean by that is that there will just be small differences you will notice from your other children (maybe a few more dirty diapers). She will probably be started on enzymes to help her digest her foods. Most kids who have delta 508 are pancreatic insufficient and need enzymes. You will also need a few high level ultrasounds to monitor her bowels. I think around 10% of those with cf are born with intestinal blockage. Ultrasounds are good at diagnosing that problem.

Regarding how to prepare your home. We choose to have hard woods in our house, but honestly I am not sure how much good eliminating dust does in helping one with cf, it just seems "to feel" like we are doing something. My kids have done really well. They both are delta 508 and have done everything like their friends (preschool, playgrounds, sports, etc). You would never know they have cf. My best advice to you is to try and keep your lives as normal as you did with your sons. Just with extra precautions like using hand sanitizer. There is no way to completely protect her from colds and bacteria. You can try, but it is just inevitable. One of my kids dr said cf kids have higher immunities and I believe it. My kids rarely come down with the colds and viruses that their friends do thankfully. When they do, they get over it with just some extra respiratory treatments. Now there have been one or two times that it did turn into pneumonia and they needed IV antibiotics to get over the virus, but for the most part kids with cf can over a cold just like their siblings.

I imagine the appt with the cf dr will be a bit overwhelming. Take paper to write down information you are given. Try not to focus too much on the cf diagnosis and just focus on what a precious baby you will be expecting.
If you want send me an e-mail to sdelorenzo@sbcglobal.net and I can send you a slide show of my kids. Hopefully you will be able to see what great lives they lives dispite their diagnosis. Take care.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant one month carrier

 

[sdelorenzo]

Welcome! Congratulations about the baby you are expecting first of all. I know it can be challenging to find out about cf before the baby is born. I already had a daughter with cf when I found out my 2nd was going to have cf while I was pregnant with him. While I knew what a great life my son was going to have, it still was hard accepting his diagnosis since the only thing I knew about him was his diagnosis.
<br />
<br />I think the first thing is for you to realize is how "perfect" your daughter will be. What I mean by that is that there will just be small differences you will notice from your other children (maybe a few more dirty diapers). She will probably be started on enzymes to help her digest her foods. Most kids who have delta 508 are pancreatic insufficient and need enzymes. You will also need a few high level ultrasounds to monitor her bowels. I think around 10% of those with cf are born with intestinal blockage. Ultrasounds are good at diagnosing that problem.
<br />
<br />Regarding how to prepare your home. We choose to have hard woods in our house, but honestly I am not sure how much good eliminating dust does in helping one with cf, it just seems "to feel" like we are doing something. My kids have done really well. They both are delta 508 and have done everything like their friends (preschool, playgrounds, sports, etc). You would never know they have cf. My best advice to you is to try and keep your lives as normal as you did with your sons. Just with extra precautions like using hand sanitizer. There is no way to completely protect her from colds and bacteria. You can try, but it is just inevitable. One of my kids dr said cf kids have higher immunities and I believe it. My kids rarely come down with the colds and viruses that their friends do thankfully. When they do, they get over it with just some extra respiratory treatments. Now there have been one or two times that it did turn into pneumonia and they needed IV antibiotics to get over the virus, but for the most part kids with cf can over a cold just like their siblings.
<br />
<br />I imagine the appt with the cf dr will be a bit overwhelming. Take paper to write down information you are given. Try not to focus too much on the cf diagnosis and just focus on what a precious baby you will be expecting.
<br />If you want send me an e-mail to sdelorenzo@sbcglobal.net and I can send you a slide show of my kids. Hopefully you will be able to see what great lives they lives dispite their diagnosis. Take care.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant one month carrier