Re: new pregnancy

[Guest guest]

I'm responding before reading the other replies..............so forgive me

if I say things already said!

The first thing that came to my mind was this-------------- after my mds

child, I've had 3 children. With the 2 pregnancies after , I had amnio's.

The second amnio, came back as " mosaic 20p- " saying that 1/3 of my

daughters cells had a deletion of the short leg of the 20th chromosome. What

seemed

like an eternal pregnancy, with tons of tests and ultrasounds,

etc........finally came to an end. I've had my daughters blood work done, AND

a skin

biopsy--- she does NOT have mosaic 20p-. The geneticist at one point

explained

to me, that it was somehow possible that the PLACENTA had the mosaicism, but

not the baby. So I had a false positive. I know that my

situation is rare. I've had jerk ob/gyn's tell me I couldn't have possibly had

a

false positive amnio before they looked at my records.................but, if

that was the case, and it was the placenta, if i'd done something like CVS,

would it have come back as if the baby had full 20p-, when she didn't have

anything at all??

MDS is almost always a fluke from my understanding. It occurs completely

differently than typical DS does....meaning, it's usually a cell division error

AFTER conception, while DS is caused by the egg or sperm having the extra

chromosome. Unless you have a genetic trait....it being something that runs in

your family.....it was most likely a fluke. I have 5 children..... is

my second----my son before him, no problems...and my 3 children after him, no

problems!

Good luck!!

~ANGEL~

Mom to 14 Mosaic Down's/Hirschsprung's Disease

Tyler 15, 12,

Jaeda 11 & Shayne 4

************************************** See what's free at http://www.aol.com.

[Guest guest]

I'm sure this is not the case always, but my sister has MDS and when my mom

had my next sister she had the test done and it said that she was going to have

MDS, also. I'm not exactly sure it was the CVS test you are talking about.

That was 18 years ago. But, when she was born she didn't. I'm sure this is

hard for you. You are in my prayers.

Stefenie

alexcat172 wrote:

Hi,

I wanted to see if I could get some feedback from some of you who may

have had a baby after your MDS child. I recently found out I am

pregnant (rather unexpectedly). I am scheduled to have a CVS done next

week and have very mixed feelings about the whole thing. I did not

choose to have an amnio while pregant with Braxton even though my

bloodwork had suggested that Braxton might have Down Syndrome.

Did anyone have CVS done? I am concerned b/c the literature indicates

that there is a 1% chance of having the test come back showing a false

positive for mosaicism. Does anyone know if having had a baby with

mosaicism will put me at a higher risk of showing this false positive?

Braxton has just turned a year. There is such little information on

mosaicism out there that I am sure my doctors will not have the

information I am looking for. I didn't know if there was a chance I

could have mosaic cells b/c I carried Braxton?

Any feedback or thoughts from anyone would be a great help to me!

Braxton MDS (12 mos) and Ashton (2.5)

---------------------------------

Need a vacation? Get great deals to amazing places on Yahoo! Travel.

[Guest guest]

-

You are in our thoughts and prayers, I also had a high triple screen with my

daughter and choose not to do an amnio due to the rate of miscarrige with

amnios - I did have a level 2 ultra sound and they found nothing wrong - and

even when she was born nothing was said to me (and I asked due to the result

from the triple screen). I did not find out until was 4 months old

and by that point I was so in love with her I did not care.

Follow your heart. Test have been known to be wrong especially on

developing babies.

Darlene - mom to and

>

> I'm sure this is not the case always, but my sister has MDS and when my

> mom had my next sister she had the test done and it said that she was going

> to have MDS, also. I'm not exactly sure it was the CVS test you are talking

> about. That was 18 years ago. But, when she was born she didn't. I'm sure

> this is hard for you. You are in my prayers.

> Stefenie

>

> alexcat172 <amandajolene@... <amandajolene%40hotmail.com>> wrote:

> Hi,

> I wanted to see if I could get some feedback from some of you who may

> have had a baby after your MDS child. I recently found out I am

> pregnant (rather unexpectedly). I am scheduled to have a CVS done next

> week and have very mixed feelings about the whole thing. I did not

> choose to have an amnio while pregant with Braxton even though my

> bloodwork had suggested that Braxton might have Down Syndrome.

>

> Did anyone have CVS done? I am concerned b/c the literature indicates

> that there is a 1% chance of having the test come back showing a false

> positive for mosaicism. Does anyone know if having had a baby with

> mosaicism will put me at a higher risk of showing this false positive?

> Braxton has just turned a year. There is such little information on

> mosaicism out there that I am sure my doctors will not have the

> information I am looking for. I didn't know if there was a chance I

> could have mosaic cells b/c I carried Braxton?

> Any feedback or thoughts from anyone would be a great help to me!

>

> Braxton MDS (12 mos) and Ashton (2.5)

>

>

>

>

>

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

> Need a vacation? Get great deals to amazing places on Yahoo! Travel.

>

>

[Guest guest]

My son Tyler had MTDS. The doctors were more concerned about the

translocation then the mosaicism. I had testing done on myself and

my husband to see if we had the translocation cells. We did not and

the doctor told us that having a child with MTDS did increase our

chances of having another child with DS, it was small. IF we did

have the translocation, then the chances of having another child with

DS would have been greater, much greater. When I found out that I

was pregnant when Tyler was 5 ½, I was rather shocked. I know what

you are going through, I been there. I had the CVS test done and got

the results back in 1 week. Everything came back fine and we now

have a 4 year old son along with the 2 older ones. Lots of luck.

Debbie Mother to Troy (12, Dyslexia) Tyler (10, MTDS) and Shane (4

and spoiled rotten by his other brothers)

>

> Hi,

> I wanted to see if I could get some feedback from some of you who

may

> have had a baby after your MDS child. I recently found out I am

> pregnant (rather unexpectedly). I am scheduled to have a CVS done

next

> week and have very mixed feelings about the whole thing. I did not

> choose to have an amnio while pregant with Braxton even though my

> bloodwork had suggested that Braxton might have Down Syndrome.

>

> Did anyone have CVS done? I am concerned b/c the literature

indicates

> that there is a 1% chance of having the test come back showing a

false

> positive for mosaicism. Does anyone know if having had a baby with

> mosaicism will put me at a higher risk of showing this false

positive?

> Braxton has just turned a year. There is such little information on

> mosaicism out there that I am sure my doctors will not have the

> information I am looking for. I didn't know if there was a chance I

> could have mosaic cells b/c I carried Braxton?

> Any feedback or thoughts from anyone would be a great help to me!

>

> Braxton MDS (12 mos) and Ashton (2.5)

>

[Guest guest]

Hi

I can tell you this...

I have never met someone who has 2 children with mosaic Down syndrome. There

are some people who actually carry the gene that causes translocation Down

syndrome or MTDS and this would give that person a higher risk of having another

child with TDS or MTDS. Then, there are people who have mosaic Down syndrome and

have children with Down syndrome or mosaic Down syndrome.

Mosaic Down syndrome happens at and/or after conception and Down syndrome

happens during conception. So, all of the reports of the 1% chance are based on

people who have children with Down syndrome (not mosaic). This is because we

haven't gotten enough research on this area. (we are working on it though!)

Think of this....

I imagine that everyone in the world has at least a 1% chance of having a

child with MDS! But, everyone also has a 99% chance of not having a child

without MDS!

I understand your fears. I had the same questions when Garrett came along 10

yrs after Tim. I think everyone has that small fear of something being wrong

with their baby no matter who they are! The doctors have to give you a 1% chance

because basically it covers them in case it happens again! They can't say that

there is no chance of you having another child with MDS because they are still

trying to figure out how you had the first one with MDS!

Take a deep breath and enjoy your pregnancy. If you are still worried, talk

with a genetic counselor and ask about doing a karyotype for you and your

husband.

Congratulations on your pregnancy!

Kristy

alexcat172 wrote:

Hi,

I wanted to see if I could get some feedback from some of you who may

have had a baby after your MDS child. I recently found out I am

pregnant (rather unexpectedly). I am scheduled to have a CVS done next

week and have very mixed feelings about the whole thing. I did not

choose to have an amnio while pregant with Braxton even though my

bloodwork had suggested that Braxton might have Down Syndrome.

Did anyone have CVS done? I am concerned b/c the literature indicates

that there is a 1% chance of having the test come back showing a false

positive for mosaicism. Does anyone know if having had a baby with

mosaicism will put me at a higher risk of showing this false positive?

Braxton has just turned a year. There is such little information on

mosaicism out there that I am sure my doctors will not have the

information I am looking for. I didn't know if there was a chance I

could have mosaic cells b/c I carried Braxton?

Any feedback or thoughts from anyone would be a great help to me!

Braxton MDS (12 mos) and Ashton (2.5)

[Guest guest]

Well, you said any feedback, so here goes:

Your baby is unique. It is your baby. If you don't have the stupid test, you

won't get the " false positive " which might lead you to do what?

Don't have tests which put your baby at risk.

Spend your energy accepting your baby, no matter how many chromosomes it has.

That will prepare you well for raising all of your children, who present all

kinds of surprises we do not expect, 99.9% of which, fortunately, cannot be

detected by seek and destroy missions of prenatal testing.

Judie, mom to Christi, 28 and others

**************************************

See what's free at http://www.aol.com.

[Guest guest]

,

First of all CONGRATULATIONS!!!!!! I am very excited to hear that your are

expecting again. My oldest son, iel, has MDS, and he has 5 younger

siblings. My husband and I have been concerned with every pregnancy, but each

of our other children haven't had any concerns with DS. In fact, we had a whole

family work up done for Dr Cook's research study, and noone had any

abnormal chromosomal studies, outside of iel.

I would caution you with the CVS study, as you do have a risk of miscarriage

with the proceedure.

Irene in TX mom to iel 13 MDS, Luke 11, Emilia 8, Lillian 6, Isaac 3, and

Agnes 4mo

new pregnancy

Hi,

I wanted to see if I could get some feedback from some of you who may

have had a baby after your MDS child. I recently found out I am

pregnant (rather unexpectedly) . I am scheduled to have a CVS done next

week and have very mixed feelings about the whole thing. I did not

choose to have an amnio while pregant with Braxton even though my

bloodwork had suggested that Braxton might have Down Syndrome.

Did anyone have CVS done? I am concerned b/c the literature indicates

that there is a 1% chance of having the test come back showing a false

positive for mosaicism. Does anyone know if having had a baby with

mosaicism will put me at a higher risk of showing this false positive?

Braxton has just turned a year. There is such little information on

mosaicism out there that I am sure my doctors will not have the

information I am looking for. I didn't know if there was a chance I

could have mosaic cells b/c I carried Braxton?

Any feedback or thoughts from anyone would be a great help to me!

Braxton MDS (12 mos) and Ashton (2.5)

[Guest guest]

Hi ,

Congratulations! is my fourth child who has MDs. I became

pregnant last November, and I was not nervous at all about being pregnant

again. I just prayed that the baby was healthy. I was three months

pregnant when I had a miscarriage. A karyotype was done on my baby and I

found out that it was a boy and that there was nothing wrong with him what

so ever. So enjoy your pregnancy and just pray that the baby is healthy!

Everything else will fall into place. I would not have mind if the little

boy that I lost had MDs or Ds, I am still disappointed that I lost him and

still grateful to God for my other four children.

mom to 12, 9 ½ , 7 and 4 ½ MDs

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of alexcat172

Sent: Thursday, June 21, 2007 11:07 AM

To: MosaicDS

Subject: new pregnancy

Hi,

I wanted to see if I could get some feedback from some of you who may

have had a baby after your MDS child. I recently found out I am

pregnant (rather unexpectedly). I am scheduled to have a CVS done next

week and have very mixed feelings about the whole thing. I did not

choose to have an amnio while pregant with Braxton even though my

bloodwork had suggested that Braxton might have Down Syndrome.

Did anyone have CVS done? I am concerned b/c the literature indicates

that there is a 1% chance of having the test come back showing a false

positive for mosaicism. Does anyone know if having had a baby with

mosaicism will put me at a higher risk of showing this false positive?

Braxton has just turned a year. There is such little information on

mosaicism out there that I am sure my doctors will not have the

information I am looking for. I didn't know if there was a chance I

could have mosaic cells b/c I carried Braxton?

Any feedback or thoughts from anyone would be a great help to me!

Braxton MDS (12 mos) and Ashton (2.5)

[Guest guest]

Hi,

I have 4 children ages 19, 18, 5 and 1. The older two are typical developing

kids and the younger 2 are special needs. With both of them my DH wanted me to

have amnio and I did tho I didn't want to because no matter what it came back

as, they are my children and God gave them to me to raise. My 5 year old is

Trisomy 10q (very rare) and my 1 year old is Ds/MDS. I love both girls with all

my heart and am so glad God trusted me to have them. I have lost 4 other babies

and I never found out why. It still hurts but I think that both my girls are a

part of them. I am thankful I didn't miscarry them after the amnio tests too.

Jen

new pregnancy

Hi,

I wanted to see if I could get some feedback from some of you who may

have had a baby after your MDS child. I recently found out I am

pregnant (rather unexpectedly). I am scheduled to have a CVS done next

week and have very mixed feelings about the whole thing. I did not

choose to have an amnio while pregant with Braxton even though my

bloodwork had suggested that Braxton might have Down Syndrome.

Did anyone have CVS done? I am concerned b/c the literature indicates

that there is a 1% chance of having the test come back showing a false

positive for mosaicism. Does anyone know if having had a baby with

mosaicism will put me at a higher risk of showing this false positive?

Braxton has just turned a year. There is such little information on

mosaicism out there that I am sure my doctors will not have the

information I am looking for. I didn't know if there was a chance I

could have mosaic cells b/c I carried Braxton?

Any feedback or thoughts from anyone would be a great help to me!

Braxton MDS (12 mos) and Ashton (2.5)