Genetic Counseling

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oatmeal28

New member
Hi all,

I was wondering if I could get some advice on what to expect in terms of genetic counseling. I was recently diagnosed this past May and I am engaged to be married this coming June. My soon-to-be husband and I have talked about children shortly after we get married as we have been together for over 5 years and I just turned 30 and him 33...obviously my diagnosis has changed this plan slightly until we get more information about his carrier status.

I was wondering what should I expect upon meeting with a genetic counselor? I just received the number from my CF doc...so I was planning on calling them soon. Also what is the purpose of meeting with them? Do they evaluate your health history to see if you should have a baby OR just offer the advice for my husband to have the complete genetic testing? Is this also for insurance reasons...where they see you have been evaluated and are more likely to cover another genetic testing?

Any advice would be great! Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
O

oatmeal28

New member
Hi all,

I was wondering if I could get some advice on what to expect in terms of genetic counseling. I was recently diagnosed this past May and I am engaged to be married this coming June. My soon-to-be husband and I have talked about children shortly after we get married as we have been together for over 5 years and I just turned 30 and him 33...obviously my diagnosis has changed this plan slightly until we get more information about his carrier status.

I was wondering what should I expect upon meeting with a genetic counselor? I just received the number from my CF doc...so I was planning on calling them soon. Also what is the purpose of meeting with them? Do they evaluate your health history to see if you should have a baby OR just offer the advice for my husband to have the complete genetic testing? Is this also for insurance reasons...where they see you have been evaluated and are more likely to cover another genetic testing?

Any advice would be great! Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
O

oatmeal28

New member
Hi all,
<br />
<br />I was wondering if I could get some advice on what to expect in terms of genetic counseling. I was recently diagnosed this past May and I am engaged to be married this coming June. My soon-to-be husband and I have talked about children shortly after we get married as we have been together for over 5 years and I just turned 30 and him 33...obviously my diagnosis has changed this plan slightly until we get more information about his carrier status.
<br />
<br />I was wondering what should I expect upon meeting with a genetic counselor? I just received the number from my CF doc...so I was planning on calling them soon. Also what is the purpose of meeting with them? Do they evaluate your health history to see if you should have a baby OR just offer the advice for my husband to have the complete genetic testing? Is this also for insurance reasons...where they see you have been evaluated and are more likely to cover another genetic testing?
<br />
<br />Any advice would be great! Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

my65roses4me

New member
When my husband and I saw a genetic counselor they went over our family histories. They told us the chances of our baby having CF. They already had my husband blood test back to review with us. I already knew everything they told us but it was nice to have a professional explain it to my hubby. He already knew it too but for him it was nice to have someone else explain it. We actually asked to have the appt to have his blood test explained. They brought out charts and statistics. If nothing else its educational and reassuring <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

my65roses4me

New member
When my husband and I saw a genetic counselor they went over our family histories. They told us the chances of our baby having CF. They already had my husband blood test back to review with us. I already knew everything they told us but it was nice to have a professional explain it to my hubby. He already knew it too but for him it was nice to have someone else explain it. We actually asked to have the appt to have his blood test explained. They brought out charts and statistics. If nothing else its educational and reassuring <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

my65roses4me

New member
When my husband and I saw a genetic counselor they went over our family histories. They told us the chances of our baby having CF. They already had my husband blood test back to review with us. I already knew everything they told us but it was nice to have a professional explain it to my hubby. He already knew it too but for him it was nice to have someone else explain it. We actually asked to have the appt to have his blood test explained. They brought out charts and statistics. If nothing else its educational and reassuring <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mamaScarlett

Active member
We met with the GC several years ago before we conceived our first daughter and again after getting pregnant.
They took a full history of both sides of our family, gave us a genetic family tree, and took our test results to determine the chances of Cf etc. My husband had already been negative as a carrier prior.
There's very limited information you are going to get unless your fiance is tested before going to counseling.
The only way they can give you full results and % is if they have both of your information ready.
My husband had the full panel test from Ambry for Cf carrier. At the time we had very good ins. coverage and it was paid for. But not everyone is that lucky.
I'd post a question about your partner getting tested in the adult section and you'll get alot of feedback. It is extremely important to get the test that checks for ALL the mutations, and not the 200 or so most common mutations. Most of the time you will only be offered the limited test-and the full one may not even be offered to you bc of insurances issues.
It may not change the outcome, or the decision that you make but some just want all the information they can get so they can go from there.
 
M

mamaScarlett

Active member
We met with the GC several years ago before we conceived our first daughter and again after getting pregnant.
They took a full history of both sides of our family, gave us a genetic family tree, and took our test results to determine the chances of Cf etc. My husband had already been negative as a carrier prior.
There's very limited information you are going to get unless your fiance is tested before going to counseling.
The only way they can give you full results and % is if they have both of your information ready.
My husband had the full panel test from Ambry for Cf carrier. At the time we had very good ins. coverage and it was paid for. But not everyone is that lucky.
I'd post a question about your partner getting tested in the adult section and you'll get alot of feedback. It is extremely important to get the test that checks for ALL the mutations, and not the 200 or so most common mutations. Most of the time you will only be offered the limited test-and the full one may not even be offered to you bc of insurances issues.
It may not change the outcome, or the decision that you make but some just want all the information they can get so they can go from there.
 
M

mamaScarlett

Active member
We met with the GC several years ago before we conceived our first daughter and again after getting pregnant.
<br />They took a full history of both sides of our family, gave us a genetic family tree, and took our test results to determine the chances of Cf etc. My husband had already been negative as a carrier prior.
<br />There's very limited information you are going to get unless your fiance is tested before going to counseling.
<br />The only way they can give you full results and % is if they have both of your information ready.
<br />My husband had the full panel test from Ambry for Cf carrier. At the time we had very good ins. coverage and it was paid for. But not everyone is that lucky.
<br />I'd post a question about your partner getting tested in the adult section and you'll get alot of feedback. It is extremely important to get the test that checks for ALL the mutations, and not the 200 or so most common mutations. Most of the time you will only be offered the limited test-and the full one may not even be offered to you bc of insurances issues.
<br />It may not change the outcome, or the decision that you make but some just want all the information they can get so they can go from there.
 
O

oatmeal28

New member
Thank you to everyone for your feedback as I had no idea that he would need to get tested prior to the counseling, which makes total sense <img src="i/expressions/face-icon-small-smile.gif" border="0"> My doc made it sound like they would be the ones that would evaluate that and refer him to get the testing or something which was why I was confused. I do want him to get the full testing as soon as he can as I know it takes so long to get back...I will ask my doctor what next steps should be before I even make the counseling appt. thanks again!!
 
O

oatmeal28

New member
Thank you to everyone for your feedback as I had no idea that he would need to get tested prior to the counseling, which makes total sense <img src="i/expressions/face-icon-small-smile.gif" border="0"> My doc made it sound like they would be the ones that would evaluate that and refer him to get the testing or something which was why I was confused. I do want him to get the full testing as soon as he can as I know it takes so long to get back...I will ask my doctor what next steps should be before I even make the counseling appt. thanks again!!
 
O

oatmeal28

New member
Thank you to everyone for your feedback as I had no idea that he would need to get tested prior to the counseling, which makes total sense <img src="i/expressions/face-icon-small-smile.gif" border="0"> My doc made it sound like they would be the ones that would evaluate that and refer him to get the testing or something which was why I was confused. I do want him to get the full testing as soon as he can as I know it takes so long to get back...I will ask my doctor what next steps should be before I even make the counseling appt. thanks again!!
 
T

tammy48093

New member
I am excited for you to consider a family. It is the best thing in the world. I was 24 when I got pregnant and went to GC after inception. We did have my husband's cheek swabed and the results waiting for us when we got there. My experience was NOT positive however. My husband came back 20,000 to 1 odds, but the councelor was RUDE! The attitude I got was "How dare you knowingly perpetuate a genetic disease" I was taken back by the attutude of the practitioner. My answer to her was- I am a college educated self sustaining member of society and your implication is that my mom should have ended my life???? We were prepared to love our baby no matter what, and GC ended up just upsetting me.
I hope in the 17 years since my experience they have learned to handle issues like this differently.
 
T

tammy48093

New member
I am excited for you to consider a family. It is the best thing in the world. I was 24 when I got pregnant and went to GC after inception. We did have my husband's cheek swabed and the results waiting for us when we got there. My experience was NOT positive however. My husband came back 20,000 to 1 odds, but the councelor was RUDE! The attitude I got was "How dare you knowingly perpetuate a genetic disease" I was taken back by the attutude of the practitioner. My answer to her was- I am a college educated self sustaining member of society and your implication is that my mom should have ended my life???? We were prepared to love our baby no matter what, and GC ended up just upsetting me.
I hope in the 17 years since my experience they have learned to handle issues like this differently.
 
T

tammy48093

New member
I am excited for you to consider a family. It is the best thing in the world. I was 24 when I got pregnant and went to GC after inception. We did have my husband's cheek swabed and the results waiting for us when we got there. My experience was NOT positive however. My husband came back 20,000 to 1 odds, but the councelor was RUDE! The attitude I got was "How dare you knowingly perpetuate a genetic disease" I was taken back by the attutude of the practitioner. My answer to her was- I am a college educated self sustaining member of society and your implication is that my mom should have ended my life???? We were prepared to love our baby no matter what, and GC ended up just upsetting me.
<br />I hope in the 17 years since my experience they have learned to handle issues like this differently.
 
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