RE: A new mom with questions.

September 21, 2005

Britta,

I have a daughter 23 year old daughter and a 21 year old daughter who has

CHARGE.

At this time of your loss there are few words to say. Please know I wish for

you to find strength and guidance and hope. I will also keep n in my

thoughts.

Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to

September 21, 2005

Hi Britta, My name is Joe and my wife Gwendelyn and I have 3 children.

ph(2 y.o.) our middle child is our CHARGEr and then we have the oldest

Chloe(4

y.o.) and ( 91/2 months). We, like you were a bit taken back by our

childs' condition. My heart goes out for n because those early days

were very trying and my condolences as well. Just to let you know though,

ph is doing pretty darn good - He has several more operations ahead but he

is

a big strong boy and he'll make it through. As I mentioned we have

who has been warmly welcomed into our family. She is awesome - a little angel

as they all are. We had her 18 months and 2 days after ph and she doesn't

have CHARGE or any other medical scenarios. And Chloe, Well Chloe is one

wonderful little girl just loving her little brother and sister like there is

no tomorrow. So I guess I'm trying to say that with love and positivity you

can get through anything. We did have Gwendelyn get some extensive Ultrasounds

when was in the womb but again everything turned out great. I

don't think I would be irresponsible for saying " Go for it " . In my experience

with being a parent I cherish the fact that I have a bigger family because it

gives us, ph and our other two a chance to lean on each other, learn from

each other and create a sense of normalcy(Which is sometimes a challenge with

specialists, therapists and nurses visiting the home). You may want to get a

few more opinions but I think most people would agree you have to press on do

what makes you and your family happy. I hope I have helped - Sincerely,

Joe & family

September 21, 2005

Britta-

We have three sons-

16, with CHARGE

Ellliot 13, medically unremarkable

Ethan, 11, also medically unremarkable

Thank you for your post -

The best of everything to you and your husband at this time and always-

Yuka

September 22, 2005

Britta,

I have three children:

16 (no medical or other issues other than being a TEENAGER!)

14 (no medical issues)

Kennedy 7 (CHARGE)...

More info can be found about everything (one) in our family at our web site:

http://ca.geocities.com/weirfamilyrogers

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

September 22, 2005

Thank you and actually I looked at your website before I even knew about the

listserv. I found it through some other website. Crazy how information comes to

us huh?

Weir wrote:

Britta,

I have three children:

16 (no medical or other issues other than being a TEENAGER!)

14 (no medical issues)

Kennedy 7 (CHARGE)...

More info can be found about everything (one) in our family at our web site:

http://ca.geocities.com/weirfamilyrogers

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

September 22, 2005

Welcome Britta,

Our daughter Kiara is adopted but she has 5 biological

siblings and all are healthy and developing within the

average milestones for their age. Kiara is 14 and her

bio siblings are brothers 19 and 8. Her sisters are

17, 10, and 2. All Kiara's siblings are not with

biological parents but have brought much happiness to

the families who have adopted or taken guardianship of

these children.

Thinking of you

mom to Kiara (14)

--- annabritta123 wrote:

> Hi all,

> My name is Britta and my husband and I lost

> our 6 week old

> boy, n, to CHARGE and was told about this

> listserv by a few

> people. I live in Tucson and have had the good

> fortune of meeting

> with Kim Lauger who has been wonderful to talk with

> and ask

> questions of, as I'm sure you all know.

>

> n is our first child and to be very honest the

> six weeks he

> was alive were medically and emotionally

> devastating. However, I

> find myself still wanting more children (down the

> road) but we are

> very scared to have more children of our own. I've

> read all the

> research I can get my hands on and I know the

> chances of this

> happening again (if we, the parents, are unaffected)

> is about a 1-3%

> chance.

>

> What I'm hoping you will share with me is how many

> children you

> have, their ages and if they have medical issues,

> learning

> disabilities, etc. I know you don't know me and I'm

> asking personal

> things but I really need to hear from people who

> have had the

> experience and are not just statistics. Any

> information you feel

> comfortable sharing would mean a great deal to us.

> I'm guess I'm

> just so scared that this or something worse could

> happen again.

>

> Thank you so much and please know that reading your

> listserv has

> been amazing. You have powerful courage and such

> strong love in your

> hearts, it's a wonderful thing to read at such a

> difficult time in

> my life.

>

> Britta , mom to n

>

__________________________________________________

September 22, 2005

Hi Britta

My first born with CHARGE is a 14yr old boy n.

Son 12yrs

Daughter 2yrs

We went for the girl 10 years later. We, like yourself, prayed for four months

before trying and we were blessed with beautiful healthy children. Whatever you

decide to do is such a personal decision. We tossed around the idea of adopting

and struggled with it for a long time. You will go through so many emotions

when trying to make the decision. The 'selfish' one is the emotion I battled

with most.

You will be in our thoughts and prayers!

Sundi

A new mom with questions.

Hi all,

My name is Britta and my husband and I lost our 6 week old

boy, n, to CHARGE and was told about this listserv by a few

people. I live in Tucson and have had the good fortune of meeting

with Kim Lauger who has been wonderful to talk with and ask

questions of, as I'm sure you all know.

n is our first child and to be very honest the six weeks he

was alive were medically and emotionally devastating. However, I

find myself still wanting more children (down the road) but we are

very scared to have more children of our own. I've read all the

research I can get my hands on and I know the chances of this

happening again (if we, the parents, are unaffected) is about a 1-3%

chance.

What I'm hoping you will share with me is how many children you

have, their ages and if they have medical issues, learning

disabilities, etc. I know you don't know me and I'm asking personal

things but I really need to hear from people who have had the

experience and are not just statistics. Any information you feel

comfortable sharing would mean a great deal to us. I'm guess I'm

just so scared that this or something worse could happen again.

Thank you so much and please know that reading your listserv has

been amazing. You have powerful courage and such strong love in your

hearts, it's a wonderful thing to read at such a difficult time in

my life.

Britta , mom to n

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

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or email

info@....

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

September 22, 2005

Oh, Britta, I feel so for you. Please know that my thoughts and prayers are

with you - along with those of many, many others.

I understand your concerns. Please know that our CHaRgEr, , is

now 21. It has been a long but worthwhile road.

Her sister, , just turned 26. She graduated at the top of her

class in highschool and Magna from a splendid, rigorous liberal arts

college. She is beautiful, bright, can be nasty, too adventurous, and on

and on. She definitely does not have CHARGE.

Andy and I would have had other children after . Unfortunately, I

had a rh factor that couldn't be explained by miscarriage or abortion. The

risks from THAT stopped us ultimately, not the threat of CHARGE.

I'm glad you reached Kim. Know that others are here for you, too.

Martha

September 22, 2005

Hi Britta,

My name is Djenne and I have 3 children, one of which is Malik who is a 9

year old CHARGEr. My heart goes out to you at this time. I know there are no

words to ease the pain of loss. Our son , Malik has been a real trooper and

survivor. He, too was very medically fragile at birth and we didnt think he was

going to make it many times. We still have had those scary moments throughout

the years, but thank God he has gotten stronger. We have a 10 yr old daughter

Imani and a 4 yr old daughter, Zakiya. We too wanted to have more children

after Malik, but were so emotionally and physically exhausted and scared. It

took us five years to make the decision to try again. We ended up doing an

amnio with her bec they thought she may have down's, but she is fine. It was a

hard decision to have another child, but we realized that we had been given the

strength and tools to survive and do a decent job with Malik and Imani, so why

not go for it! I dont say that to minimize anything. We too did research about

the odds of having another kid with special needs. Then Zee came along who is a

joy. We even tried for # 4 after she was born...I know we were nuts...but to no

avail. I'm convinced that it was divine intervention bec we had reached our

limit! We ahve a great family and I'm glad we took the chance, but the road is

not always easy trying to meet the needs of a child who has so many special

needs and as well as the needs of two other children and a husband! As long as

you and your husband are unified in the decision to have another child and are

there for each other, you can make it, I believe.

You can emal me directly @ djenne @bell south.net if you'd like to talk more.

I'm more than willing to be a shoulder. Stay strong and you are in our prayers!

God Bless! Djenne mom of Malik, Imani & Zee

>

> Date: 2005/09/21 Wed PM 06:27:57 EDT

> To: CHARGE

> Subject: A new mom with questions.

>

> Hi all,

> My name is Britta and my husband and I lost our 6 week old

> boy, n, to CHARGE and was told about this listserv by a few

> people. I live in Tucson and have had the good fortune of meeting

> with Kim Lauger who has been wonderful to talk with and ask

> questions of, as I'm sure you all know.

>

> n is our first child and to be very honest the six weeks he

> was alive were medically and emotionally devastating. However, I

> find myself still wanting more children (down the road) but we are

> very scared to have more children of our own. I've read all the

> research I can get my hands on and I know the chances of this

> happening again (if we, the parents, are unaffected) is about a 1-3%

> chance.

>

> What I'm hoping you will share with me is how many children you

> have, their ages and if they have medical issues, learning

> disabilities, etc. I know you don't know me and I'm asking personal

> things but I really need to hear from people who have had the

> experience and are not just statistics. Any information you feel

> comfortable sharing would mean a great deal to us. I'm guess I'm

> just so scared that this or something worse could happen again.

>

> Thank you so much and please know that reading your listserv has

> been amazing. You have powerful courage and such strong love in your

> hearts, it's a wonderful thing to read at such a difficult time in

> my life.

>

> Britta , mom to n

>

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

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or email

info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

>

September 22, 2005

HI Britta,

My name is . I have a four year old, Makenna with CHARGE. We don't

have any other children so I can't help with your questions. I just wanted

to give you my condolences and welcome you to the list.

, Makenna's mom

-- A new mom with questions.