Newborn diagnosed with CF

[nlwlrandall]

My newborn baby girl has been diagnosed with cf. It was found in her newborn screening. We go to the children's hospital on Monday to do a sweat test, meet with ENT and see a pulmonary specialist. Her mutations are <b>DeltaF508</b> and <b>R117H</b>. Soes anyone have these mutations or combination of mutations? I'd like to know how severe her case may be and to hear from someone in the very same boat. I am so broken hearted. One never plans on having babies only to outlive them. She's beautiful and perfect in every way.

Thanks for listening.
Laura

Mom of William 2 1/2 no cf and Lillian 3 weeks with cf

 

[nlwlrandall]

My newborn baby girl has been diagnosed with cf. It was found in her newborn screening. We go to the children's hospital on Monday to do a sweat test, meet with ENT and see a pulmonary specialist. Her mutations are <b>DeltaF508</b> and <b>R117H</b>. Soes anyone have these mutations or combination of mutations? I'd like to know how severe her case may be and to hear from someone in the very same boat. I am so broken hearted. One never plans on having babies only to outlive them. She's beautiful and perfect in every way.

Thanks for listening.
Laura

Mom of William 2 1/2 no cf and Lillian 3 weeks with cf

 

[nlwlrandall]

My newborn baby girl has been diagnosed with cf. It was found in her newborn screening. We go to the children's hospital on Monday to do a sweat test, meet with ENT and see a pulmonary specialist. Her mutations are <b>DeltaF508</b> and <b>R117H</b>. Soes anyone have these mutations or combination of mutations? I'd like to know how severe her case may be and to hear from someone in the very same boat. I am so broken hearted. One never plans on having babies only to outlive them. She's beautiful and perfect in every way.

Thanks for listening.
Laura

Mom of William 2 1/2 no cf and Lillian 3 weeks with cf

 

[nlwlrandall]

My newborn baby girl has been diagnosed with cf. It was found in her newborn screening. We go to the children's hospital on Monday to do a sweat test, meet with ENT and see a pulmonary specialist. Her mutations are <b>DeltaF508</b> and <b>R117H</b>. Soes anyone have these mutations or combination of mutations? I'd like to know how severe her case may be and to hear from someone in the very same boat. I am so broken hearted. One never plans on having babies only to outlive them. She's beautiful and perfect in every way.

Thanks for listening.
Laura

Mom of William 2 1/2 no cf and Lillian 3 weeks with cf

 

[nlwlrandall]

My newborn baby girl has been diagnosed with cf. It was found in her newborn screening. We go to the children's hospital on Monday to do a sweat test, meet with ENT and see a pulmonary specialist. Her mutations are <b>DeltaF508</b> and <b>R117H</b>. Soes anyone have these mutations or combination of mutations? I'd like to know how severe her case may be and to hear from someone in the very same boat. I am so broken hearted. One never plans on having babies only to outlive them. She's beautiful and perfect in every way.

Thanks for listening.
Laura

Mom of William 2 1/2 no cf and Lillian 3 weeks with cf

 

[JazzysMom]

Here are links where that combo is discussed & some of who have them:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=17788&highlight_key=y
">http://forums.cysticfibrosis.c...17788&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y">http://forums.cysticfibrosis.c...d=1881&highlight_key=y</a>

 

[JazzysMom]

Here are links where that combo is discussed & some of who have them:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=17788&highlight_key=y
">http://forums.cysticfibrosis.c...17788&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y">http://forums.cysticfibrosis.c...d=1881&highlight_key=y</a>

 

[JazzysMom]

Here are links where that combo is discussed & some of who have them:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=17788&highlight_key=y
">http://forums.cysticfibrosis.c...17788&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y">http://forums.cysticfibrosis.c...d=1881&highlight_key=y</a>

 

[JazzysMom]

Here are links where that combo is discussed & some of who have them:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=17788&highlight_key=y
">http://forums.cysticfibrosis.c...17788&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y">http://forums.cysticfibrosis.c...d=1881&highlight_key=y</a>

 

[JazzysMom]

Here are links where that combo is discussed & some of who have them:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=17788&highlight_key=y
">http://forums.cysticfibrosis.c...17788&highlight_key=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y">http://forums.cysticfibrosis.c...d=1881&highlight_key=y</a>

 

[lilismom]

Laura,
I'm sorry to hear about Lillian's diagnosis. We've only found 1 of my Lili's mutations and since her treatment won't change finding out the other one we haven't done further genetic testing. She does have 1 deltaF508. From what I've read people with the same mutations can have very differing symptoms so I wouldn't get hung up on what the genes are. Someday in the future when the figure out gene therapy it may make more of a difference.

Try to enjoy your baby - I can imagine how hard it is.

 

[lilismom]

Laura,
I'm sorry to hear about Lillian's diagnosis. We've only found 1 of my Lili's mutations and since her treatment won't change finding out the other one we haven't done further genetic testing. She does have 1 deltaF508. From what I've read people with the same mutations can have very differing symptoms so I wouldn't get hung up on what the genes are. Someday in the future when the figure out gene therapy it may make more of a difference.

Try to enjoy your baby - I can imagine how hard it is.

 

[lilismom]

Laura,
I'm sorry to hear about Lillian's diagnosis. We've only found 1 of my Lili's mutations and since her treatment won't change finding out the other one we haven't done further genetic testing. She does have 1 deltaF508. From what I've read people with the same mutations can have very differing symptoms so I wouldn't get hung up on what the genes are. Someday in the future when the figure out gene therapy it may make more of a difference.

Try to enjoy your baby - I can imagine how hard it is.

 

[lilismom]

Laura,
I'm sorry to hear about Lillian's diagnosis. We've only found 1 of my Lili's mutations and since her treatment won't change finding out the other one we haven't done further genetic testing. She does have 1 deltaF508. From what I've read people with the same mutations can have very differing symptoms so I wouldn't get hung up on what the genes are. Someday in the future when the figure out gene therapy it may make more of a difference.

Try to enjoy your baby - I can imagine how hard it is.

 

[lilismom]

Laura,
I'm sorry to hear about Lillian's diagnosis. We've only found 1 of my Lili's mutations and since her treatment won't change finding out the other one we haven't done further genetic testing. She does have 1 deltaF508. From what I've read people with the same mutations can have very differing symptoms so I wouldn't get hung up on what the genes are. Someday in the future when the figure out gene therapy it may make more of a difference.

Try to enjoy your baby - I can imagine how hard it is.

 

[Mommafirst]

Hi Laura,

Welcome!! I'm so sorry to hear your news. Its heartbreaking every new baby diagnosed for me. From what I've seen the combination your little girl has is one that several people on the boards have, I think you will feel a sense of great hope when you see some of the adults around here living with CF.

I don't really have anything else to add, I just wanted you to know you aren't alone in this road.

 

[Mommafirst]

Hi Laura,

Welcome!! I'm so sorry to hear your news. Its heartbreaking every new baby diagnosed for me. From what I've seen the combination your little girl has is one that several people on the boards have, I think you will feel a sense of great hope when you see some of the adults around here living with CF.

I don't really have anything else to add, I just wanted you to know you aren't alone in this road.

 

[Mommafirst]

Hi Laura,

Welcome!! I'm so sorry to hear your news. Its heartbreaking every new baby diagnosed for me. From what I've seen the combination your little girl has is one that several people on the boards have, I think you will feel a sense of great hope when you see some of the adults around here living with CF.

I don't really have anything else to add, I just wanted you to know you aren't alone in this road.

 

[Mommafirst]

Hi Laura,

Welcome!! I'm so sorry to hear your news. Its heartbreaking every new baby diagnosed for me. From what I've seen the combination your little girl has is one that several people on the boards have, I think you will feel a sense of great hope when you see some of the adults around here living with CF.

I don't really have anything else to add, I just wanted you to know you aren't alone in this road.

 

[Mommafirst]

Hi Laura,

Welcome!! I'm so sorry to hear your news. Its heartbreaking every new baby diagnosed for me. From what I've seen the combination your little girl has is one that several people on the boards have, I think you will feel a sense of great hope when you see some of the adults around here living with CF.

I don't really have anything else to add, I just wanted you to know you aren't alone in this road.