Re: twin CHARGER's ?

October 20, 2000

, I have fraternal twin girls who will be "15" on New Years Eve. Only one was affected with charge. The other is LD but has a very high self esteem and struggles for every grade. AB honor roll up until this year when she started her freshman year. Lydia

mom to chrgr Kim, Alia, and

Kav810@... wrote:

Hello there, I was talking with someone about CHARGE and mentioned I had read there were a couple sets of twins on the list. Aren't there a set where just on is affected, and a set where they are both affected to different degree's? If so what kind of twins are they and how are they affected? I guess it goes back to the question about the likelihood it is genetic. V."5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

October 20, 2000

, Something else in regard to genetics. My x's brother was born almost completely deaf, their mother claiming it was nerve damage from a forceps birth. At 17 years of age he had surgery to "unblock" his sinus. He is married, has children and leads a very productive life. This all happened years before my girls were born. I am convinced that he had choanal atresia. Kim's doctors were very interested in seeing his records but my x mother in law said no one in the family had ever been born without holes in their nose and it was that my body could not nourish two babies at one time. Talk about ignorant! Enough said.

Lydia

Kav810@... wrote:

Hello there, I was talking with someone about CHARGE and mentioned I had read there were a couple sets of twins on the list. Aren't there a set where just on is affected, and a set where they are both affected to different degree's? If so what kind of twins are they and how are they affected? I guess it goes back to the question about the likelihood it is genetic. V."5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

October 20, 2000

,

was an identical twin. Her twin, , did not survive due to

hypoplastic heart. We had no options to help her due to her size and a

coarctation of the aorta. It is thought that she also had CHARGE. I agree

with the docs. They did not check for colobomas and all the other

stuff that goes with CHARGE. Looking back, and knowing what we know now,

maybe we should have. But we wanted to enjoy the hours that we had with her

and were also dealing with 's problems. Therefore, I do believe that

there are genetics involved. We are very fortunate to have two other very

healthy girls...

G

>From: Kav810@...

>Reply-To: CHARGEegroups

>To: CHARGEegroups

>Subject: twin CHARGER's ?

>Date: Thu, 19 Oct 2000 19:12:39 EDT

>

>Hello there,

> I was talking with someone about CHARGE and mentioned I had read

>there were a couple sets of twins on the list. Aren't there a set where

>just

>on is affected, and a set where they are both affected to different

>degree's?

>If so what kind of twins are they and how are they affected? I guess it

>goes

>back to the question about the likelihood it is genetic.

>

> V.

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

>20-22, 2001. Information will be available first in CHARGE Accounts, the

>CHARGE Syndrome Foundation's newsletter. "

>

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

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October 20, 2000

Hi, I have identical Charge twins. They are both affected in all the same

areas except the heart and feeding issues. I believe we are only 1 out of 3

identical twin Chargers in the US.

Murray

WIFE TO jAY AND MOM TO mATTHEW AND bRIAN

October 21, 2000

G

When the conversation came up the question was asked " if they were

identical twins wouldn't their problems be identical " ? I had no answer for

them.......Genetics always confuses me.

October 22, 2000

,

That is what our family doctor told us before they were born---if they are

identical, then there problems should be identical---which gave us hope for

since we knew that would not survive. However, their heart

problems were similar, just 's was severe. had a coarctation of

the aorta. So did . Hers was so severe that her heart did not develop as

it should. It was explained like this: if you look at the zero on a credit

card number, their aorta should be as wide as the zero. 's was the width

of the black, raised line that makes the zero. So virtually no blood could flow

through it. So, even if they could have found a heart to transplant that was

small enough for her (a 4 lb baby), they could not connect it to the

aorta...and the docs said that the sac was that of identical twins. is

missing her left kidney, was missing her right one. They both have an

extra rib. They both had hypoplastic toenails. And they also looked identical,

although has a bilateral cleft lip and palate. but when we first saw

her lip had not curled yet and they were absolutely identical in looks.

weighed 4 lbs, 10 oz. weighed 4 lbs. 10.5 oz. So I guess you

could say they had identical problems, but like all CHARGErs, they varied in

degree.

G

Kav810@... wrote:

> G

> When the conversation came up the question was asked " if they were

> identical twins wouldn't their problems be identical " ? I had no answer for

> them.......Genetics always confuses me.

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

October 24, 2000

Hi ,

Did your doctor's know that you were pregnant with CHARGER's before they

were born? If so, how did they know? My husband and I are considering

having another child, but I am still afraid. We did not know until Landon

was 5 months old that he had CHARGE. He does not have any heart, hearing or

feeding problems - nothing was detected by ultrasound. His case is said to

be mild and I guess I am just afraid of the potential problems we could face

with a more severely affected baby.