Re: got bad CVS test results :(

[Guest guest]

I'm so sorry this has happened. I will be thinking of your family....

Dawn mom of 4, 7 and under, the youngest wcf

got bad CVS test results

Hello everyone. I wanted to update you all on the results of our CVS

(chorionic villus sampling) test we had done last week. I was 11

weeks pregnant when they did the test and I got some bad news. We

did the CVS test to check if the fetus had CF. We knew that if it

did, we would not continue with the pregnancy but we were hoping it

would be fine.

Ironically the bad news has nothing to do with

cystic fibrosis. The fetus, a girl, had 's

Syndrome which is a genetic anomoly, not inherited.

It is a chromosomal condition that exclusively affects

girls and women, 1 in 5000 births. It occurs when one of the two X

chromosomes normally found in females is missing or

incomplete. The most common characteristics of

syndrome include short stature and lack of

ovarian development. A number of other physical

features, such as webbed neck, arms that turn out

slightly at the elbow, and a low hairline in the back

of the head are sometimes seen in syndrome

patients. Individuals with syndrome are also

prone to cardiovascular problems, kidney and thyroid

problems, skeletal disorders such as scoliosis

(curvature of the spine) or dislocated hips, and

hearing and ear disturbances. (this is all from the

website http://www.turner-syndrome-us.org)

Since all my husband and I were asking for was a healthy

child, we decided not to continue with this

pregnancy and we have already started the in-vitro fertilzation

process and will do pre implantation genetic diagnosis to test for

several things including CF. We have not received the CF test results

yetand they aren't due back until June 25 or so but it

doesn't really matter now.

We seem to be targets for rare genetic and chromosomal problems!

Thanks for all your support and encouragement.

--mom to Ashton 2 yrs wcf

[Guest guest]

> Hello everyone. I wanted to update you all on the results of our

CVS

> (chorionic villus sampling) test we had done last week. I was 11

> weeks pregnant when they did the test and I got some bad news. We

> did the CVS test to check if the fetus had CF. We knew that if it

> did, we would not continue with the pregnancy but we were hoping

it

> would be fine.

>

> Ironically the bad news has nothing to do with

> cystic fibrosis. The fetus, a girl, had 's

> Syndrome which is a genetic anomoly, not inherited.

> It is a chromosomal condition that exclusively affects

> girls and women, 1 in 5000 births. It occurs when one of the two X

> chromosomes normally found in females is missing or

> incomplete. The most common characteristics of

> syndrome include short stature and lack of

> ovarian development. A number of other physical

> features, such as webbed neck, arms that turn out

> slightly at the elbow, and a low hairline in the back

> of the head are sometimes seen in syndrome

> patients. Individuals with syndrome are also

> prone to cardiovascular problems, kidney and thyroid

> problems, skeletal disorders such as scoliosis

> (curvature of the spine) or dislocated hips, and

> hearing and ear disturbances. (this is all from the

> website http://www.turner-syndrome-us.org)

>

> Since all my husband and I were asking for was a healthy

> child, we decided not to continue with this

> pregnancy and we have already started the in-vitro fertilzation

> process and will do pre implantation genetic diagnosis to test for

> several things including CF. We have not received the CF test

results

> yetand they aren't due back until June 25 or so but it

> doesn't really matter now.

>

> We seem to be targets for rare genetic and chromosomal problems!

>

> Thanks for all your support and encouragement.

>

> --mom to Ashton 2 yrs wcf

[Guest guest]

I am sorry to hear about the test results. I hope your other options

turn out successful.

I do know a family that has 4 biological children. Now ages 16-24.

The first two have some sort of neurological

impairments/developmental delays. The third one has Down's Syndrome

and the fourth one is Autistic.

Having a brother with Spina Bifida/developmental delays has made me

appreciate life even more as it's almost like a box of

chocolates...you never know what you are going to get.

[Guest guest]

I am so sorry to hear about your CVS results. My heart aches for you in

having to go through this. Just know that you are not alone in your sorrows and

that you have a list full of people wishing the best for you. May your pain

ease in time.

Mom to Josh 9 wcf & Crohn's and 4 nocf but wants to do

therapy for

his brother.

[Guest guest]

I am so sorry, this must be very hard, I feel for anyone who loses a child

even though you have never seen your child, it was still your little one. I

lost a child at 8 days old due to CF. It always aches deep inside when I

hear of someone losing a baby, either by choice or not. Take care and I

hope your PGD cycle goes well for your family, you deserve it. We are also

going to do this cycle at a later date.

I just always remind myself that things happen for a reason even though we

dont know the bigger picture, its somewhere out there.

Love to your family

and , baby Liam 9 monthwcf and Lily Madison who died in our arms

at 8 days old due to CF complications.

Fly little angels

got bad CVS test results

> Hello everyone. I wanted to update you all on the results of our CVS

> (chorionic villus sampling) test we had done last week. I was 11

> weeks pregnant when they did the test and I got some bad news. We

> did the CVS test to check if the fetus had CF. We knew that if it

> did, we would not continue with the pregnancy but we were hoping it

> would be fine.

>

> Ironically the bad news has nothing to do with

> cystic fibrosis. The fetus, a girl, had 's

> Syndrome which is a genetic anomoly, not inherited.

> It is a chromosomal condition that exclusively affects

> girls and women, 1 in 5000 births. It occurs when one of the two X

> chromosomes normally found in females is missing or

> incomplete. The most common characteristics of

> syndrome include short stature and lack of

> ovarian development. A number of other physical

> features, such as webbed neck, arms that turn out

> slightly at the elbow, and a low hairline in the back

> of the head are sometimes seen in syndrome

> patients. Individuals with syndrome are also

> prone to cardiovascular problems, kidney and thyroid

> problems, skeletal disorders such as scoliosis

> (curvature of the spine) or dislocated hips, and

> hearing and ear disturbances. (this is all from the

> website http://www.turner-syndrome-us.org)

>

> Since all my husband and I were asking for was a healthy

> child, we decided not to continue with this

> pregnancy and we have already started the in-vitro fertilzation

> process and will do pre implantation genetic diagnosis to test for

> several things including CF. We have not received the CF test results

> yetand they aren't due back until June 25 or so but it

> doesn't really matter now.

>

> We seem to be targets for rare genetic and chromosomal problems!

>

> Thanks for all your support and encouragement.

>

> --mom to Ashton 2 yrs wcf

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

T feel the same way. I am truly saddened for you & your hubby

LOVE & HUGS

GrandmomBEV

Re: got bad CVS test results

I am so sorry, this must be very hard, I feel for anyone who loses a child

even though you have never seen your child, it was still your little one. I

lost a child at 8 days old due to CF. It always aches deep inside when I

hear of someone losing a baby, either by choice or not. Take care and I

hope your PGD cycle goes well for your family, you deserve it. We are also

going to do this cycle at a later date.

I just always remind myself that things happen for a reason even though we

dont know the bigger picture, its somewhere out there.

Love to your family

and , baby Liam 9 monthwcf and Lily Madison who died in our arms

at 8 days old due to CF complications.

Fly little angels

got bad CVS test results

> Hello everyone. I wanted to update you all on the results of our CVS

> (chorionic villus sampling) test we had done last week. I was 11

> weeks pregnant when they did the test and I got some bad news. We

> did the CVS test to check if the fetus had CF. We knew that if it

> did, we would not continue with the pregnancy but we were hoping it

> would be fine.

>

> Ironically the bad news has nothing to do with

> cystic fibrosis. The fetus, a girl, had 's

> Syndrome which is a genetic anomoly, not inherited.

> It is a chromosomal condition that exclusively affects

> girls and women, 1 in 5000 births. It occurs when one of the two X

> chromosomes normally found in females is missing or

> incomplete. The most common characteristics of

> syndrome include short stature and lack of

> ovarian development. A number of other physical

> features, such as webbed neck, arms that turn out

> slightly at the elbow, and a low hairline in the back

> of the head are sometimes seen in syndrome

> patients. Individuals with syndrome are also

> prone to cardiovascular problems, kidney and thyroid

> problems, skeletal disorders such as scoliosis

> (curvature of the spine) or dislocated hips, and

> hearing and ear disturbances. (this is all from the

> website http://www.turner-syndrome-us.org)

>

> Since all my husband and I were asking for was a healthy

> child, we decided not to continue with this

> pregnancy and we have already started the in-vitro fertilzation

> process and will do pre implantation genetic diagnosis to test for

> several things including CF. We have not received the CF test results

> yetand they aren't due back until June 25 or so but it

> doesn't really matter now.

>

> We seem to be targets for rare genetic and chromosomal problems!

>

> Thanks for all your support and encouragement.

>

> --mom to Ashton 2 yrs wcf

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

and husband,

You are in my special thoughts.

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

> Hello everyone. I wanted to update you all on the results of our

CVS

> (chorionic villus sampling) test we had done last week. I was 11

> weeks pregnant when they did the test and I got some bad news. We

> did the CVS test to check if the fetus had CF. We knew that if it

> did, we would not continue with the pregnancy but we were hoping it

> would be fine.

>

> Ironically the bad news has nothing to do with

> cystic fibrosis. The fetus, a girl, had 's

> Syndrome which is a genetic anomoly, not inherited.

> It is a chromosomal condition that exclusively affects

> girls and women, 1 in 5000 births. It occurs when one of the two X

> chromosomes normally found in females is missing or

> incomplete. The most common characteristics of

> syndrome include short stature and lack of

> ovarian development. A number of other physical

> features, such as webbed neck, arms that turn out

> slightly at the elbow, and a low hairline in the back

> of the head are sometimes seen in syndrome

> patients. Individuals with syndrome are also

> prone to cardiovascular problems, kidney and thyroid

> problems, skeletal disorders such as scoliosis

> (curvature of the spine) or dislocated hips, and

> hearing and ear disturbances. (this is all from the

> website http://www.turner-syndrome-us.org)

>

> Since all my husband and I were asking for was a healthy

> child, we decided not to continue with this

> pregnancy and we have already started the in-vitro fertilzation

> process and will do pre implantation genetic diagnosis to test for

> several things including CF. We have not received the CF test

results

> yetand they aren't due back until June 25 or so but it

> doesn't really matter now.

>

> We seem to be targets for rare genetic and chromosomal problems!

>

> Thanks for all your support and encouragement.

>

> --mom to Ashton 2 yrs wcf

[Guest guest]

In a message dated 6/19/2003 4:16:27 PM Central Daylight Time,

jeninca1010@... writes:

> --mom to Ashton 2 yrs wcf

I am so sorry!!!! Is there a change they could be wrong? Deb A

[Guest guest]

There is always a possibility but they grew extra cells to triple

check the results of the first test run. Out of 20 cells, 11 of them

were missing the X chromosome.

Ironically, we just got word yesterday that the baby was only a CF

carrier. ugh.

> In a message dated 6/19/2003 4:16:27 PM Central Daylight Time,

> jeninca1010@y... writes:

>

>

> > --mom to Ashton 2 yrs wcf

>

> I am so sorry!!!! Is there a change they could be wrong? Deb A

>

>

>

[Guest guest]

In a message dated 6/21/2003 8:36:09 AM Central Daylight Time,

jeninca1010@... writes:

> There is always a possibility but they grew extra cells to triple

> check the results of the first test run. Out of 20 cells, 11 of them

> were missing the X chromosome.

>

> Ironically, we just got word yesterday that the baby was only a CF

> carrier. ugh.

,

I am so sorry!!!!!! I wish they were wrong our got the test mixed up with

someone else. I hate to hear anyone terminate a pregnancy because I have heard

of

people hearing bad news and deciding to continue the pregnancy to find out

later the doctors were wrong and the babies was find. Can you get a second

opinion? DebA

[Guest guest]

Unfortunately it is too late for any other opinions. I could have

waited another 4 weeks to do an amnio and then waited another week

for results but if they were bad, I would have had to do a

termination at nearly 17 weeks along. and that is just too long to

wait. It is hard to argue with chromosome results, especially when

they checked it 3 times. If it has been just an ultrasound, I

probably would have waited but the science behind all this is pretty

good. We are in the process now of doing in-vitro.

> ,

> I am so sorry!!!!!! I wish they were wrong our got the test mixed

up with

> someone else. I hate to hear anyone terminate a pregnancy because I

have heard of

> people hearing bad news and deciding to continue the pregnancy to

find out

> later the doctors were wrong and the babies was find. Can you get a

second

> opinion? DebA

>

>

>

[Guest guest]

---

I think your amazingly strong and brave. Hang in there.......

Rosemary in NY with 3 children (12, 10 and 6)

with CF. I have a dog named TOBI and

coined the phrase " BREATHE DAMMIT "