RE: A new mom with questions.

[Guest guest]

Debbie,

I am glad someone told you, as I had mentioned you to Britta when we met.

Is the CHARGE angels site still up and active?

Kim

> Britta -

>

>

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

>> boy, n, to CHARGE ...

>

> My deepest sympathies on the death of n. I hope that the 6

> weeks you had with him will bring you some peace in time.

>

> My daughter Sara died almost 5 years ago also due to CHARGE. She was

> on the more severe end of the spectrum. After her death, we sought

> more information about CHARGE but ultimately opted to complete our

> family via international adoption (our situation is also complicated

> by infertility issues as well as difficulties during pregnacy).

> However, our situation differs from yours in that Sara was our second

> and we didn't want to put our first child thru another loss. I think

> my perspective was also affected by meeting another mother who's

> CHARGE child died, who subsequently had another child who was also

> aflicted. While the second CHARGE child was very mildly affected

> (probably the most mild diagnosis at the time), the impact on their

> older child was also quite apparent to me.

>

> It's a very difficult decision and I wish you peace as you make it.

>

> Hugs,

> Debbie

>

> PS Please feel free to write back offlist if you wish (debbie @ icus

> . com). While I'm still a member of this list, I don't read the

> messages anymore unless someone asks me offlist.

>

>

>

>

>

>

> 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-.

>

[Guest guest]

I hope your pain eases soon with the loss of your baby. I am so sorry.

I have/had

- 8 with no medical issues

2 miscarriages

- 5 CHARGE

Emma - 3 in October with no medical issues.

I didn't plan on Emma - I still don't know how she got here! She is such a

joy and it was so wonderful to experience a healthy birth after the " trauma "

of 's birth and first years--for my husband, me, and . Honestly,

after the miscarriages and 's health problems I don't know if I would

have " tried " for another child for fear of heartbreak - I'm very thankful

things worked out the way they did with Emma.

I wish you happiness and courage.

Lori Myers

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-.

>

[Guest guest]

I am glad Emma came into your life.

Kim

> I hope your pain eases soon with the loss of your baby. I am so sorry.

>

> I have/had

> - 8 with no medical issues

> 2 miscarriages

> - 5 CHARGE

> Emma - 3 in October with no medical issues.

>

> I didn't plan on Emma - I still don't know how she got here! She is such a

> joy and it was so wonderful to experience a healthy birth after the " trauma "

> of 's birth and first years--for my husband, me, and . Honestly,

> after the miscarriages and 's health problems I don't know if I would

> have " tried " for another child for fear of heartbreak - I'm very thankful

> things worked out the way they did with Emma.

>

> I wish you happiness and courage.

>

> Lori Myers

>

>

> 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-.

>>

[Guest guest]

Britta,

I am sorry it took so long for me to respond to your message. I have been away

for a whlie. I first would like to say that I am very sorry to hear about the

loss of your son, n. I can't even imagine what you must be going through.

My name is Christene and I am a mother to a typical little girl Hannah (19

months). My neice, igh (4 months with CHARGE) is the reason I signed on to

this listserv. Everyone here is so encouraging and willing to help in everyway

the can. I am not sure if you still were interested in info, but I can tell you

a little of what I know. When igh was born the doctors wanted to send her

home because they didn't think she would make it weeks. igh is 4 months old

now and has already had two surgeries . One to close her fix her Floppy trachea

and another for the g-tube. Her severe reflux has become almost mild thanks to

the operation. They are not sure about her vision and she has moderate hearing

loss in one ear. The other ear is

underdeveloped. She is missing the outer lobe. She has Two small holes in her

heart which doctors are hoping will heal in their own. Developmentally, we were

told that we just had to wait and see. Despite her setbacks, she is alert and

loves attention. She responds so well to interaction and loves being held. My

brother-in-law has another daughter MacKenzie, who turns 2 next month. She has

no medical problems and is a typical little girl. Both parents have no history

of the gene and I am not sure if Kenzie will be tested. I am not sure how that

works. this is still fairly new to me too. I hope some of this helps you.

Please feel free to let me know if I can find anything out for you. The nurses

that take care of igh are so wonderful and helpful! Praying for you and

your family.

Christene (mom to Hannah-19 months and Aunt to igh-4 months-CHARGE)

> 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-.