Question about newborn screening

Alyssa · Sep 4, 2007

screenings only test for markers, not actual genes - so even if she had a screening it would not be full proof.

I can't say that it would matter much if you knew for sure if the genes came down from your mom's side or your dads - even if you did knew and it was the wrong parent - she and her husband could still be carriers of other CF genes. The baby should still be tested based on symptoms and possible family connection.

I think you should mention it to her - hopefully she will take your advise and not just blow you off.

Best wishes!

Alyssa · Sep 4, 2007

screenings only test for markers, not actual genes - so even if she had a screening it would not be full proof.

I can't say that it would matter much if you knew for sure if the genes came down from your mom's side or your dads - even if you did knew and it was the wrong parent - she and her husband could still be carriers of other CF genes. The baby should still be tested based on symptoms and possible family connection.

I think you should mention it to her - hopefully she will take your advise and not just blow you off.

Best wishes!

Alyssa · Sep 4, 2007

screenings only test for markers, not actual genes - so even if she had a screening it would not be full proof.

I can't say that it would matter much if you knew for sure if the genes came down from your mom's side or your dads - even if you did knew and it was the wrong parent - she and her husband could still be carriers of other CF genes. The baby should still be tested based on symptoms and possible family connection.

I think you should mention it to her - hopefully she will take your advise and not just blow you off.

Best wishes!

Alyssa · Sep 4, 2007

screenings only test for markers, not actual genes - so even if she had a screening it would not be full proof.

I can't say that it would matter much if you knew for sure if the genes came down from your mom's side or your dads - even if you did knew and it was the wrong parent - she and her husband could still be carriers of other CF genes. The baby should still be tested based on symptoms and possible family connection.

I think you should mention it to her - hopefully she will take your advise and not just blow you off.

Best wishes!

Alyssa · Sep 4, 2007

screenings only test for markers, not actual genes - so even if she had a screening it would not be full proof.

I can't say that it would matter much if you knew for sure if the genes came down from your mom's side or your dads - even if you did knew and it was the wrong parent - she and her husband could still be carriers of other CF genes. The baby should still be tested based on symptoms and possible family connection.

I think you should mention it to her - hopefully she will take your advise and not just blow you off.

Best wishes!

jdprecious · Sep 4, 2007

I certainly hope that baby Kinsley is not affected by CF nor any other children yet to become a part of our family. I think it was just the way that Amanda was asking me certain questions. It seemed like she knew deep down something wasn't right. I could sense it, it was familiar to me. I emailed my aunt and asked her to make sure that Amanda mentions the CF thing to Kinsley's doctors. I think I might email Amanda too but I don't want to freak her out. She is a young mother of a newborn so she has enough on her plate at the moment. So, how do I find out which family (mom or dad) gave me this blessed gene mutation?? If I knew now, that could save so much heartache for my sisters down the road.

jdprecious · Sep 4, 2007

I certainly hope that baby Kinsley is not affected by CF nor any other children yet to become a part of our family. I think it was just the way that Amanda was asking me certain questions. It seemed like she knew deep down something wasn't right. I could sense it, it was familiar to me. I emailed my aunt and asked her to make sure that Amanda mentions the CF thing to Kinsley's doctors. I think I might email Amanda too but I don't want to freak her out. She is a young mother of a newborn so she has enough on her plate at the moment. So, how do I find out which family (mom or dad) gave me this blessed gene mutation?? If I knew now, that could save so much heartache for my sisters down the road.

jdprecious · Sep 4, 2007

I certainly hope that baby Kinsley is not affected by CF nor any other children yet to become a part of our family. I think it was just the way that Amanda was asking me certain questions. It seemed like she knew deep down something wasn't right. I could sense it, it was familiar to me. I emailed my aunt and asked her to make sure that Amanda mentions the CF thing to Kinsley's doctors. I think I might email Amanda too but I don't want to freak her out. She is a young mother of a newborn so she has enough on her plate at the moment. So, how do I find out which family (mom or dad) gave me this blessed gene mutation?? If I knew now, that could save so much heartache for my sisters down the road.

jdprecious · Sep 4, 2007

I certainly hope that baby Kinsley is not affected by CF nor any other children yet to become a part of our family. I think it was just the way that Amanda was asking me certain questions. It seemed like she knew deep down something wasn't right. I could sense it, it was familiar to me. I emailed my aunt and asked her to make sure that Amanda mentions the CF thing to Kinsley's doctors. I think I might email Amanda too but I don't want to freak her out. She is a young mother of a newborn so she has enough on her plate at the moment. So, how do I find out which family (mom or dad) gave me this blessed gene mutation?? If I knew now, that could save so much heartache for my sisters down the road.

jdprecious · Sep 4, 2007

I certainly hope that baby Kinsley is not affected by CF nor any other children yet to become a part of our family. I think it was just the way that Amanda was asking me certain questions. It seemed like she knew deep down something wasn't right. I could sense it, it was familiar to me. I emailed my aunt and asked her to make sure that Amanda mentions the CF thing to Kinsley's doctors. I think I might email Amanda too but I don't want to freak her out. She is a young mother of a newborn so she has enough on her plate at the moment. So, how do I find out which family (mom or dad) gave me this blessed gene mutation?? If I knew now, that could save so much heartache for my sisters down the road.

Ratatosk · Sep 4, 2007

Recently DH's cousin asked me about carrier screening. She was getting the run around at the clinic -- told it was expensive, might not be covered under insurance... So I contacted the grandmother of a cfer, who told me that after her granddaughter's diagnosis and prior to a family reunion, 40 people went to the local clinic and were tested, so they could inform other relatives about the possibility of CF. Only one out of that group wasn't covered under insurance.

My MIL got in on the conversation and indicated that she wanted to get tested, so then she could tell people on her side of the family that the didn't need to worry. I had to have a chat with her about how it doesn't necessarily work that way. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Ratatosk · Sep 4, 2007

Recently DH's cousin asked me about carrier screening. She was getting the run around at the clinic -- told it was expensive, might not be covered under insurance... So I contacted the grandmother of a cfer, who told me that after her granddaughter's diagnosis and prior to a family reunion, 40 people went to the local clinic and were tested, so they could inform other relatives about the possibility of CF. Only one out of that group wasn't covered under insurance.

My MIL got in on the conversation and indicated that she wanted to get tested, so then she could tell people on her side of the family that the didn't need to worry. I had to have a chat with her about how it doesn't necessarily work that way. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Ratatosk · Sep 4, 2007

Recently DH's cousin asked me about carrier screening. She was getting the run around at the clinic -- told it was expensive, might not be covered under insurance... So I contacted the grandmother of a cfer, who told me that after her granddaughter's diagnosis and prior to a family reunion, 40 people went to the local clinic and were tested, so they could inform other relatives about the possibility of CF. Only one out of that group wasn't covered under insurance.

My MIL got in on the conversation and indicated that she wanted to get tested, so then she could tell people on her side of the family that the didn't need to worry. I had to have a chat with her about how it doesn't necessarily work that way. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Ratatosk · Sep 4, 2007

Recently DH's cousin asked me about carrier screening. She was getting the run around at the clinic -- told it was expensive, might not be covered under insurance... So I contacted the grandmother of a cfer, who told me that after her granddaughter's diagnosis and prior to a family reunion, 40 people went to the local clinic and were tested, so they could inform other relatives about the possibility of CF. Only one out of that group wasn't covered under insurance.

My MIL got in on the conversation and indicated that she wanted to get tested, so then she could tell people on her side of the family that the didn't need to worry. I had to have a chat with her about how it doesn't necessarily work that way. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Ratatosk · Sep 4, 2007

Recently DH's cousin asked me about carrier screening. She was getting the run around at the clinic -- told it was expensive, might not be covered under insurance... So I contacted the grandmother of a cfer, who told me that after her granddaughter's diagnosis and prior to a family reunion, 40 people went to the local clinic and were tested, so they could inform other relatives about the possibility of CF. Only one out of that group wasn't covered under insurance.

My MIL got in on the conversation and indicated that she wanted to get tested, so then she could tell people on her side of the family that the didn't need to worry. I had to have a chat with her about how it doesn't necessarily work that way. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

jdprecious · Sep 4, 2007