Re: children with other health problems

May 10, 2004

, I don't know if I can help, but I can tell you that I know a little

about how you feel. We have had four children, two healthy, one with CHARgE,

and One that lived for three days. He was born with a blockage in his

intestine. We were also told that it was unrelated. We are very blessed to

have

had two healthy children, but now are to afraid to attempt to have any more. I

know that the odds are that if we did, they would be fine, but still not sure

that we are ready to take that risk. I believe that if one day, I was to feel

peace about the idea of having more children, I would trust that all would

be fine, but at this point I don't think I could handle another unhealthy

child. Again, I don't know if this helps, but I do wish you well in your

decision.

My thoughts are with you, DeAnn

Mom to Austin 9, Cameron (deceased, would be 7), 5, and CHARgE

Whitney 9 months

May 11, 2004

Hi ,

You have had it rough and our hearts go out to you.

We have also had a few losses on our way to having a family.

Our first baby died at birth, 41 weeks gestation, just a freak thing that

happened. He was fine when my water broke and he was dead 20 minutes later

by the time I got to the hospital. We did not do an autopsy as he looked

perfectly formed and beautiful.

We then had two healthy children who are now 16 and 13, although my 16yo has

Inattentive ADD and learning disabilities.

Then we had a miscarriage.

Then we had our baby with CHARGE.

I don't drink, do drugs, do what the docs say, eat fairly well etc. and yet

these things happen.

I cannot tell you how things will turn out for you if you try again, but I

know for us that having our three kids is just right for us.

If you check the archive on this list under genetics there is lots of

information about the current thinking about the risk of having another

child with CHARGE that might set your mind at ease. Also the CHARGE

Syndrome Foundation has a manual that contains lots of useful information.

I hope all goes well for you.

Kim L

Mom to Dylan 7 CHaRGE, Kayla 13, Tyler 16

> Hello my name is . I have a two year old boy named Steffen

> with Charge.My husband and I had a baby girl named le last

> August. She was worn 9 pounds 9 onces full term and died three hours

> later with a heart condition called Transposition of the great

> vessals. We are looking for any one with any information/ comments

> as the doctors at Toronto sick kids fell that Steffens charge

> syndrome and le's heart condition are two speratic, unrelated

> unfortunate events ?????? We would love to give Steffen a sibling

> and have another baby but feel like we are playing russan roulet

> with our lives. We are two healty, young non smoking/drinking people

> who have has really bad luck. please let me know if you have any

> comments.

>

> thanks Zimmer

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

May 11, 2004