Hello

[Guest guest]

Dawn - Welcome to the group. You've come to the right place and I hope that you find the companionship, support and advice that you're looking for. Know that all of us struggle with staying on top of all of the email so if you miss responding not to worry. I have an SCS also but have not had much success with it (and also have been through several surgeries with it.....You got the "ugh" part right!). Looking forward to getting to know you better - Barbara"Not Tellin...." wrote:

Hello Everyone, I'm new and I'm also behind on my messages. I've had RSD in my right foot for 6 years and in my right hand for 3 years. I'm currently taking Topomax (which I like alot better than Neurontin-which didn't help me at all) and Elavil, for sleeping at night. I'm scheduled to have my 3rd SCS put in on March 7th ( the day before my b-day - ugghh!!!) for my hand - yes I typed my 3rd - long painful story!!!. It's nice to read messages and to talk to people who actually know what I go through on a daily basis. Now I am not really good at reading my email or messages daily, I'm a single, working full time mom of a beautiful 9 yr old son. So as you can imagine between dealing with my RSD, working (when I can) and taking care of him - my plate stays full. But I will do my best to stay in contact and keep up with all messages

posted and everything that's going on. These support groups are what keeps me going and a big part of what keeps me positive. I wish everyone pain free days and sleep filled nights. :-)

[Guest guest]

Hi and welcome to the group. Where are you from? I also have had RSD but in my left leg for 6 years. It just with-in the last year spread to my hands, arm's and my right leg. I also was on Topmax but had a reaction to it. I also was on the Neurontin and when they had me taking 15 pills a night I said enough was enough. So good luck with taking the Topmax and hope that you have a pain free day's and nights.

Sheri

-- Hello

Hello Everyone, I'm new and I'm also behind on my messages. I've had RSD in my right foot for 6 years and in my right hand for 3 years. I'm currently taking Topomax (which I like alot better than Neurontin-which didn't help me at all) and Elavil, for sleeping at night. I'm scheduled to have my 3rd SCS put in on March 7th ( the day before my b-day - ugghh!!!) for my hand - yes I typed my 3rd - long painful story!!!. It's nice to read messages and to talk to people who actually know what I go through on a daily basis. Now I am not really good at reading my email or messages daily, I'm a single, working full time mom of a beautiful 9 yr old son. So as you can imagine between dealing with my RSD, working (when I can) and taking care of him - my plate stays full. But I will do my best to stay in contact and keep up with all messages posted and everything that's going on. These support groups are what keeps me going and a big part of what keeps me positive. I wish everyone pain free days and sleep filled nights. :-)

[Guest guest]

david wrote:

> My wife is also diabetic, but in the 100 range.

> We bought a lot of candy over the Halloween sales, hate to just

> through it all away. IS there a way to portion it or something so we

> can finish it off and still get the problem under control?

Sure there is - portion it out to people who don't have diabetes.

CarolR

[Guest guest]

> Do read the links in the intro post. Not just sugar but also many

> starchy foods may well be nonos for you. My husband can tolerate a

> small amount of certain fruits and certain rather starchy veggies

like

> sweet potato, but we normally have no starch at the evening meals

and

> any bread is a special bread (whole grain -- I mean GRAINS in it --

> pumpernickel, one small slice) and limited. Breakfasts are eggs

and

> bacon or sausage and NO toast and fake juice or maybe tomoato juice

> alternating with a SMALL amount of low carb cereal (bran buds and

> Uncle Sam's) topped with yoghurt and again the fake juice (Crystal

> Light). Snacks are nuts or half an apple with peanut butter.

>

> He is doing very well and although he's on 500mg Metformin I don't

> believe it does anything. He was quite a bit worse than you on

> diagnosis, so a low carb diet will probably work very well for you.

>

> Re candy, toss it! Low carb ice cream is now quite good, low carb

> chocolate exists, and there are lots of low carb dessert recipes

> available.

Glad the low carb ice cream is getting better.

>

> Let me make a suggestion. If you want to have a small amount of

some

> forbidden " fruit " occasionally, make it really good, not Halloween

> candy. For example, we bought a box of Truffles chocolate candy at

> Trader Joe's today. The pieces are very small but ABSOLUTELY

> DELICIOUS and are only 14g carb for 4 pieces of which 1 is fiber.

So

> 1 piece is about 3 g carb.

Truffles, we both love those.

>

> We find it useful to focus on the good things he can eat rather

than

> the things he can't. For example, fat is not forbidden on this

diet

> (except trans fats should be avoided by everyone). So butter and

> olive oil and cream and sausage and nuts are all just fine.

Avocados,

> yum! We have a big mixed salad almost every night with avocado and

> other veggies in it. It's a good filler.

>

> > Got a free blood sugar tester also.

>

> The cost is not the tester but the strips. Do you have insurance

to

> cover them? At least initially you can use a lot because you need

to

> know what affects you and how much. So measuring after an iffy

meal

> at 1 hr and 2 hr is very instructive.

>

NO insurance. I endeavor to learn all that I can.

[Guest guest]

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

[Guest guest]

& ,

First of all, congratulations on the birth of Elijah. I remember those

early scary days; we were also told at 2 months that our daughter was

completely blind, deaf, and retarded. This has not turned out to be the

case. It's hard for them to accurately get a read 100% of what

hearing/vision levels they have. Kennedy does have a severe-profound

hearing loss and some visual problems but she is far from completely blind

or deaf (our web site is listed by my signature, you can see videos of her

reading books, dancing, etc on her page...also early pictures probably

similar to what Elijah looks like right now).

As for the lifespan, it varies as CHARGE varies so much within the

population itself. My daughter had most of the " high morbidity " defects at

birth and is now in grade 3 in regular school, goes to Brownies, did 3 years

of dance and is on a bowling team. They are all so different and it's so

hard to tell in those early " medical trauma " days. It's hard to imagine

right now but things will not be as bad as they seem right now; it's all

just very new and very terrifying. I remember it well. You are doing a

good thing by talking to other parents who've been there in your same

shoes. The listserv was a saving grace for me in the early days. Are there

any doctors at your hospital who've dealt with CHARGE syndrome before (or in

neighboring hospitals?) It might do you good to speak to someone who has

more experience with CHARGE in the past. Also, the CHARGE Syndrome manual

is available (print copy) from the US CHARGE Syndrome Foundation at

www.chargesyndrome.org or you can view it online at that same address. It's

full of information.

The secretions issue is a big one early on, Kennedy had bilateral choanal

atresia and still has a lot of gunk up her nose after a bunch of surgeries

to fix it. We used to keep them loose with a saline spray and suction

whenever she needed it. Now she has a nose-spray bottle that she does

herself over the sink and blows all the gunk out of there. Kennedy would

desat quite a bit as a baby, we would have to change her position and she

would come right out of it usually with minimal intervention.

Keep hangin' in guys, the first year is the hardest and then things seem to

calm down. I can't wait to hear more about Elijah. Please feel free to ask

a lot of questions, there will be at least someone here who has gone through

something similar and may have some words of advice for you.

Wishing you much strength & love,

Mom to Kennedy (NB, Canada) - www.chargesyndrome.info

>

> Hi,

> My name is . My wife recently gave birth to our first child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some complications

> with him. We were with him for just a few minutes before they wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have the

> disorder. Through the testing we have learned that he is completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good chance

> that we will lose him. We wonder what the average lifespan is for a

> child with CHARGE. We wonder what kind of life he will have if he is

> both blind and deaf. And a multitude of others. We both just need to

> hear the truth about what we all can expect. Our doctors continue to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

and ,

Welcome to the list and congradulations on the birth of Elijah. My son Evan

is now 21 months old, and while he does not have the same combinations of

complications Elijah has (CHARGE is so variable, no two kids will be affected

the same) we have delt with many of the issues you are dealing with. I remember

being over-whelmed with information, with the prognosis for my child's future,

our financial future, the emotions of grieving for the child we were " supposed "

to have...who definately was not the tiny bundle of wires and sensors I saw in

the incubator. All these feelings are normal.

I'm sure it is a shock to be told your child is both blind and deaf. I think

the first thing to realize is the blindness does not necessarily mean total

blackness--in your son's case, if colobomas are the cause of his vision loss he

almost certainly has some vision. Deafness is the same way--there is a range.

My son has (at least as far as we know with the testing done so far) severe to

profound hearing loss in one ear and profound in the other. He has hearing aids

right now--it's debatable how much these are helping. My husband and I are

learning ASL.

Evan desatted TONS when he was in the NICU because he couldn't handle or

swallow his saliva and nasal secretions. When he came home (after 4 months in

the hospital), we had a portable suction machine to help him and used it up

until he was 18 months old. Now, he only needs it if he is sick. Other

complications my son has: single, abnormally functioning kidney; severe

gastroesphogeal reflux (had to have surgery for this); facial nerve palsy; poor

swallow (he is 100% tube fed)

If you are interested, I keep a webpage about Evan.

www.babysites.com/sites/skeybunny There are links to pages of other kids with

CHARGE.

Hugs,

(mom to Evan, 21 months, ChaRGE)

emorydawg1 emorydawg@...> wrote:

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

---

Hi , my name is Mark and I have a son with CHARGE, also. Just

as you called your son a " beautiful baby boy " , I feel the same way

about my son. We got our first diagnosis when he was a few months

old, and the doctors told us it may be fatal. I was 43 years old and

had never had a child. My wife and I had tried for years to have a

baby, and the doctors finally told us we just probably wouldn't

conceive. When I heard that he might die I was crushed. I had never

felt such pain in my life. still has some problems, but

nothing that seems life threatening now. I can't speak for your

son's case and what his future will hold, but I do understand how you

feel and what you are going through. Further, I do know this: From

what I have been told, most CHARGE children progress and get better.

I wish nothing but the absolute best for you, your family and your

son.

Mark

In CHARGE , " emorydawg1 " wrote:

>

> Hi,

> My name is . My wife recently gave birth to our first

child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some

complications

> with him. We were with him for just a few minutes before they

wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the

signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have

the

> disorder. Through the testing we have learned that he is completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that

is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good

chance

> that we will lose him. We wonder what the average lifespan is for a

> child with CHARGE. We wonder what kind of life he will have if he

is

> both blind and deaf. And a multitude of others. We both just need

to

> hear the truth about what we all can expect. Our doctors continue

to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

[Guest guest]

Hello welcome to the CHARGE family

Im Chantelle (an adult with CHARGE syndrome).

Out of curriosity... did the doctors actualy do tests to determin his

vision and hearing levels? I was dx at birth with being compleatly

deaf and compleatly blind. I may be deafblind but I can function well

with adaptive technology.

Im sure everyone here will answer any questions and concernts you

have, I look forward to talking more with you.

Chantelle (CHARGEr)

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

[Guest guest]

and ,

This is a trying time for you, just have faith. My 4 month old has Charge

and it started the same way for us. They also told us that our son was

completely blind and deaf but they were wrong. The prognosis may get

better. Prepare for the worst and hope for the best. Stay positive and be

Elijah's advocate. If the doctor's push you and you don't agree with

them....question them until you're sure that's what is right for Elijah.

Every day will be a blessing for you. From what I know it does get better

over time. He was in the NICU from 12/7/06 until 3/1/07 and was discharged

from the hospital on 3/20/07. Stay strong and you'll make it through.

e

Mom to Shane 4, Logan 4 Months, Charge

" emorydawg1 "

To

Sent by: CHARGE

CHARGE@yahoogroup cc

s.com

Subject

Hello

04/13/2007 11:26

AM

Please respond to

CHARGE@yahoogroup

s.com

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

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[Guest guest]

Dear and ,

My son, , was also given diagnosis of total blindness and

deafness at birth. Doctor told his biological parents that there was

no hope he would ever function normally. His birth parents gave him

up for adoption. spent the first 5 1/2 years of his life in an

institution.

We took out of the institution at 5 1/2 and adopted him. He

is 31 years old now. He does have a profound hearing loss but

communicates with sign. He is blind in one eye and has holes in

vision in the other. He had involvement in all the 6 areas of CHARGE.

Heart surgery, stomach surgery, trach, tube fed. When he came to us

at the age of 5 he was still in diapers. could not chew or swallow,

and was not walking.

Today lives in a supported home with friends. He likes to

swim,(which he can), rides horses (in 4H growing up) He rides in

Special Olympics now. The riding he does is unasisted and he is

trotted and now learning to jog. He's learned to ride a bike when he

was 10. He works in the produce department in a grocery store. He has

a more active social life than Dad and I do.

All our kids here are living miracles. Pretty much every parent here

has heard the same words that you are hearing from the doctors now.

We have all grown in amazing wonder of what our kids can and do

endure and must of all overcome. I will pray that Eligah and you both

are given strength.

mom to (31)

>

> Hi,

> My name is . My wife recently gave birth to our first

child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some

complications

> with him. We were with him for just a few minutes before they

wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the

signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have

the

> disorder. Through the testing we have learned that he is completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that

is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good

chance

> that we will lose him. We wonder what the average lifespan is for a

> child with CHARGE. We wonder what kind of life he will have if he

is

> both blind and deaf. And a multitude of others. We both just need

to

> hear the truth about what we all can expect. Our doctors continue

to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

[Guest guest]

Hi and !

First of all, congratulations! My son Jack is a few days from being 7 months

old. He was diagnosed with CHARGE after about 6 weeks. I know how your heart

can break when you find out that your precious baby is not " normal " . I am still

going through a period of grieving for the life that Jack will never have. It

is completely normal! Don't be afraid to ask for help. This list is a great

support system.

When they determined that he had CHARGE the doctors told me that he was

completely blind and completely deaf as well. It was one of the hardest days in

the NICU. It wasn't long after that, though, that we noticed him wincing when

the nurse would slam a drawer. We had to wait 3 months for the newborn hearing

screening because the ambient noise of the NICU is enough to make a baby fail

the test. I knew if he had some hearing we would be able to work with hearing

aids to maximize it but we didn't know what we were going to do about his eyes.

We brought him home thinking that he couldn't see a thing but we treated him as

if he had perfect vision because we really had no way to tell he didn't. Now,

at almost 7 months he is reaching out for toys and focusing on our faces. It is

the most amazing feeling. He still has significant vision problems but at least

it isn't dark for him.

This just proved to me that the doctors are not always right and they do not

always know what is best for your baby. I don't mean to scare you, but you have

to ask a lot of questions and be a true advocate for your baby.

Jack also has secretion issues and is fed by g-tube because of swallowing

issues. We use suction to keep on top of the secretions.

I know this is not the baby you saw in your dreams, but he is perfect in his own

way. One thing I have learned about both mine and everyone else's CHARGErs is

that they teach us to not take anything for granted and to enjoy the little

things in every single day. I can't answer your question about life expectancy.

I know there is a statistic in the manual but if I were to keep that age in my

head I don't think I could make it through each day. Take it one day at a time

and enjoy your sweet baby boy.

~

Mom of Jack (6mo. CHARGEr)

Hello

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

__________________________________________________

[Guest guest]

Sound like my so cole the thought he could not her and now he is at 30dbs aided

so good luch and remember that the kid are special and will usually prove

everyone wrong so make sure you set his goals in life has high as possible

raymond son cole 2 with charge

Waggoner waggoner529@...> wrote:

Hi and !

First of all, congratulations! My son Jack is a few days from being 7 months

old. He was diagnosed with CHARGE after about 6 weeks. I know how your heart can

break when you find out that your precious baby is not " normal " . I am still

going through a period of grieving for the life that Jack will never have. It is

completely normal! Don't be afraid to ask for help. This list is a great support

system.

When they determined that he had CHARGE the doctors told me that he was

completely blind and completely deaf as well. It was one of the hardest days in

the NICU. It wasn't long after that, though, that we noticed him wincing when

the nurse would slam a drawer. We had to wait 3 months for the newborn hearing

screening because the ambient noise of the NICU is enough to make a baby fail

the test. I knew if he had some hearing we would be able to work with hearing

aids to maximize it but we didn't know what we were going to do about his eyes.

We brought him home thinking that he couldn't see a thing but we treated him as

if he had perfect vision because we really had no way to tell he didn't. Now, at

almost 7 months he is reaching out for toys and focusing on our faces. It is the

most amazing feeling. He still has significant vision problems but at least it

isn't dark for him.

This just proved to me that the doctors are not always right and they do not

always know what is best for your baby. I don't mean to scare you, but you have

to ask a lot of questions and be a true advocate for your baby.

Jack also has secretion issues and is fed by g-tube because of swallowing

issues. We use suction to keep on top of the secretions.

I know this is not the baby you saw in your dreams, but he is perfect in his own

way. One thing I have learned about both mine and everyone else's CHARGErs is

that they teach us to not take anything for granted and to enjoy the little

things in every single day. I can't answer your question about life expectancy.

I know there is a statistic in the manual but if I were to keep that age in my

head I don't think I could make it through each day. Take it one day at a time

and enjoy your sweet baby boy.

~

Mom of Jack (6mo. CHARGEr)

Hello

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

__________________________________________________

[Guest guest]

Hello ,

I second what most people here have said. The early days prognosis for our

daughter was also quite poor. Granted she gave us more than a few

scares while in the NICU for 3 months but now at age nearly 7 years (next

month) she gives us scares of a totally different kind (eg swinging upside

down on a swing so her head is almost mowing the lawn).

When she first underwent all the tests, we were told that her vision would

be such that she would just about only be able to dress herself. She has

surpassed this now and not only dresses herself but does a great deal of

other things too. She runs, jumps, climbs, carries out little errands for

us, helps me find things in the supermarket etc. We were also told that she

was unlikely to survive beyond about 18 months. She has obviously also

proved this statistic wrong. She was also due to have severe learning and

developmental disabilities during those 18 months. She has developmental

delay but with lots of effort, she learns at her own pace. She knows all

her alphabet and is now learning to read with lots of help. She recognises

people she had met and can name them. She knows family members and knows

that she loves to visit grandad.

is profoundly deaf and has a cochlear implant which is giving her

some hearing. We mostly communicate with her with British Sign Language

which she understands well but is still to reproduce herself. She has

bilateral coloboma and had bilateral choanal stenosis for which she had

surgery at 8 weeks old. She produced horrible gunk from her nose for ages

but this is now much better since she had her tonsils and adenoids removed

one year ago. She had complex heart problems for which she had surgery at 7

weeks and 6 months old. Medically, she was very fragile in the early days,

but she now enjoys relatively good health.

As has already been stated, every child with CHARGE is very different from

the next but there are obviously common elements. We had got to the point

of being offered the option to stop 's treatment in the early days.

This part of CHARGE is a real heartbreaker and every family will make

decisions based on their own issues and the intensity of the health problems

of their child. Truly, no-one can give a definitive answer about that

either way. We had set the limit at 's heart stopping twice.

Luckily for her and us, it did not stop at all.

Life with a child with CHARGE is very challenging. Most of us rise to the

challenge most of the time. We do get worn out of course but the joy of

every developmental milestone (measured by CHARGE terms, not general

expectations) is immense and replenishes some of the energy we lose with the

challenges.

Every parent on this list of course recognises your fear, your heartbreak,

your love for your child and also the very difficult decisions that lie

ahead of you. Keep an open mind, question the doctors, read up on the

information given to you (when you can spare the time), ask lots of

questions (doctors, this list, whoever you speak to about Elijah etc).

This list is great for info and support. Never feel anything is too small

or too trivial to ask. We can probably all honestly say we embarked into

the world of CHARGE not having heard of it previously so had lots of

questions to ask.

I wish you the very best of luck at what is one of the harder times on the

CHARGE journey. It's all true that it does get easier in due course.

Oh, and congrats on the birth of your baby boy by the way.

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Hello ,

I second what most people here have said. The early days prognosis for our

daughter was also quite poor. Granted she gave us more than a few

scares while in the NICU for 3 months but now at age nearly 7 years (next

month) she gives us scares of a totally different kind (eg swinging upside

down on a swing so her head is almost mowing the lawn).

When she first underwent all the tests, we were told that her vision would

be such that she would just about only be able to dress herself. She has

surpassed this now and not only dresses herself but does a great deal of

other things too. She runs, jumps, climbs, carries out little errands for

us, helps me find things in the supermarket etc. We were also told that she

was unlikely to survive beyond about 18 months. She has obviously also

proved this statistic wrong. She was also due to have severe learning and

developmental disabilities during those 18 months. She has developmental

delay but with lots of effort, she learns at her own pace. She knows all

her alphabet and is now learning to read with lots of help. She recognises

people she had met and can name them. She knows family members and knows

that she loves to visit grandad.

is profoundly deaf and has a cochlear implant which is giving her

some hearing. We mostly communicate with her with British Sign Language

which she understands well but is still to reproduce herself. She has

bilateral coloboma and had bilateral choanal stenosis for which she had

surgery at 8 weeks old. She produced horrible gunk from her nose for ages

but this is now much better since she had her tonsils and adenoids removed

one year ago. She had complex heart problems for which she had surgery at 7

weeks and 6 months old. Medically, she was very fragile in the early days,

but she now enjoys relatively good health.

As has already been stated, every child with CHARGE is very different from

the next but there are obviously common elements. We had got to the point

of being offered the option to stop 's treatment in the early days.

This part of CHARGE is a real heartbreaker and every family will make

decisions based on their own issues and the intensity of the health problems

of their child. Truly, no-one can give a definitive answer about that

either way. We had set the limit at 's heart stopping twice.

Luckily for her and us, it did not stop at all.

Life with a child with CHARGE is very challenging. Most of us rise to the

challenge most of the time. We do get worn out of course but the joy of

every developmental milestone (measured by CHARGE terms, not general

expectations) is immense and replenishes some of the energy we lose with the

challenges.

Every parent on this list of course recognises your fear, your heartbreak,

your love for your child and also the very difficult decisions that lie

ahead of you. Keep an open mind, question the doctors, read up on the

information given to you (when you can spare the time), ask lots of

questions (doctors, this list, whoever you speak to about Elijah etc).

This list is great for info and support. Never feel anything is too small

or too trivial to ask. We can probably all honestly say we embarked into

the world of CHARGE not having heard of it previously so had lots of

questions to ask.

I wish you the very best of luck at what is one of the harder times on the

CHARGE journey. It's all true that it does get easier in due course.

Oh, and congrats on the birth of your baby boy by the way.

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

i want to welcome u to the group im ellen a 21 year old charger in june ill

b 22 hang on thats bout two months away!!!!!!!!!!!1111 well we were told i

wouldnt live many times through my life and look at me nearly as i said 22

and i fly along LOL im in aus ive got the hearing and vision issues ive got

reflux probs and many other stuff but dont let that stop ME im a healty

happy girl with many friends and believe that there is hope for all oru

chargers on herei wont deny that a few die in fact in the last few months a

few have but in my mind they were just unlucky and we thank the drs for

trying hard lots of love and hugs to you

>

> Hello ,

> I second what most people here have said. The early days prognosis for our

> daughter was also quite poor. Granted she gave us more than a few

> scares while in the NICU for 3 months but now at age nearly 7 years (next

> month) she gives us scares of a totally different kind (eg swinging upside

> down on a swing so her head is almost mowing the lawn).

>

> When she first underwent all the tests, we were told that her vision would

> be such that she would just about only be able to dress herself. She has

> surpassed this now and not only dresses herself but does a great deal of

> other things too. She runs, jumps, climbs, carries out little errands for

> us, helps me find things in the supermarket etc. We were also told that

> she

> was unlikely to survive beyond about 18 months. She has obviously also

> proved this statistic wrong. She was also due to have severe learning and

> developmental disabilities during those 18 months. She has developmental

> delay but with lots of effort, she learns at her own pace. She knows all

> her alphabet and is now learning to read with lots of help. She recognises

> people she had met and can name them. She knows family members and knows

> that she loves to visit grandad.

>

> is profoundly deaf and has a cochlear implant which is giving her

> some hearing. We mostly communicate with her with British Sign Language

> which she understands well but is still to reproduce herself. She has

> bilateral coloboma and had bilateral choanal stenosis for which she had

> surgery at 8 weeks old. She produced horrible gunk from her nose for ages

> but this is now much better since she had her tonsils and adenoids removed

> one year ago. She had complex heart problems for which she had surgery at

> 7

> weeks and 6 months old. Medically, she was very fragile in the early days,

> but she now enjoys relatively good health.

>

> As has already been stated, every child with CHARGE is very different from

> the next but there are obviously common elements. We had got to the point

> of being offered the option to stop 's treatment in the early days.

> This part of CHARGE is a real heartbreaker and every family will make

> decisions based on their own issues and the intensity of the health

> problems

> of their child. Truly, no-one can give a definitive answer about that

> either way. We had set the limit at 's heart stopping twice.

> Luckily for her and us, it did not stop at all.

>

> Life with a child with CHARGE is very challenging. Most of us rise to the

> challenge most of the time. We do get worn out of course but the joy of

> every developmental milestone (measured by CHARGE terms, not general

> expectations) is immense and replenishes some of the energy we lose with

> the

> challenges.

>

> Every parent on this list of course recognises your fear, your heartbreak,

> your love for your child and also the very difficult decisions that lie

> ahead of you. Keep an open mind, question the doctors, read up on the

> information given to you (when you can spare the time), ask lots of

> questions (doctors, this list, whoever you speak to about Elijah etc).

>

> This list is great for info and support. Never feel anything is too small

> or too trivial to ask. We can probably all honestly say we embarked into

> the world of CHARGE not having heard of it previously so had lots of

> questions to ask.

>

> I wish you the very best of luck at what is one of the harder times on the

> CHARGE journey. It's all true that it does get easier in due course.

>

> Oh, and congrats on the birth of your baby boy by the way.

>

> Flo (UK)

> Mum to - CHARGE - (6) and Elly (4)

>

>

[Guest guest]

also there r soem chargers on here who r 40 and over i guess ti depen ds on

how mild it is as lisa said charge i like oru population no tow people r

exactly the same ellen in aus

>

> i want to welcome u to the group im ellen a 21 year old charger in june

> ill b 22 hang on thats bout two months away!!!!!!!!!!!1111 well we were told

> i wouldnt live many times through my life and look at me nearly as i said 22

> and i fly along LOL im in aus ive got the hearing and vision issues ive got

> reflux probs and many other stuff but dont let that stop ME im a healty

> happy girl with many friends and believe that there is hope for all oru

> chargers on herei wont deny that a few die in fact in the last few months a

> few have but in my mind they were just unlucky and we thank the drs for

> trying hard lots of love and hugs to you

>

>

> >

> > Hello ,

> > I second what most people here have said. The early days prognosis for

> > our

> > daughter was also quite poor. Granted she gave us more than a

> > few

> > scares while in the NICU for 3 months but now at age nearly 7 years

> > (next

> > month) she gives us scares of a totally different kind (eg swinging

> > upside

> > down on a swing so her head is almost mowing the lawn).

> >

> > When she first underwent all the tests, we were told that her vision

> > would

> > be such that she would just about only be able to dress herself. She has

> > surpassed this now and not only dresses herself but does a great deal of

> > other things too. She runs, jumps, climbs, carries out little errands

> > for

> > us, helps me find things in the supermarket etc. We were also told that

> > she

> > was unlikely to survive beyond about 18 months. She has obviously also

> > proved this statistic wrong. She was also due to have severe learning

> > and

> > developmental disabilities during those 18 months. She has developmental

> > delay but with lots of effort, she learns at her own pace. She knows all

> > her alphabet and is now learning to read with lots of help. She

> > recognises

> > people she had met and can name them. She knows family members and knows

> > that she loves to visit grandad.

> >

> > is profoundly deaf and has a cochlear implant which is giving

> > her

> > some hearing. We mostly communicate with her with British Sign Language

> > which she understands well but is still to reproduce herself. She has

> > bilateral coloboma and had bilateral choanal stenosis for which she had

> > surgery at 8 weeks old. She produced horrible gunk from her nose for

> > ages

> > but this is now much better since she had her tonsils and adenoids

> > removed

> > one year ago. She had complex heart problems for which she had surgery

> > at 7

> > weeks and 6 months old. Medically, she was very fragile in the early

> > days,

> > but she now enjoys relatively good health.

> >

> > As has already been stated, every child with CHARGE is very different

> > from

> > the next but there are obviously common elements. We had got to the

> > point

> > of being offered the option to stop 's treatment in the early

> > days.

> > This part of CHARGE is a real heartbreaker and every family will make

> > decisions based on their own issues and the intensity of the health

> > problems

> > of their child. Truly, no-one can give a definitive answer about that

> > either way. We had set the limit at 's heart stopping twice.

> > Luckily for her and us, it did not stop at all.

> >

> > Life with a child with CHARGE is very challenging. Most of us rise to

> > the

> > challenge most of the time. We do get worn out of course but the joy of

> > every developmental milestone (measured by CHARGE terms, not general

> > expectations) is immense and replenishes some of the energy we lose with

> > the

> > challenges.

> >

> > Every parent on this list of course recognises your fear, your

> > heartbreak,

> > your love for your child and also the very difficult decisions that lie

> > ahead of you. Keep an open mind, question the doctors, read up on the

> > information given to you (when you can spare the time), ask lots of

> > questions (doctors, this list, whoever you speak to about Elijah etc).

> >

> > This list is great for info and support. Never feel anything is too

> > small

> > or too trivial to ask. We can probably all honestly say we embarked into

> >

> > the world of CHARGE not having heard of it previously so had lots of

> > questions to ask.

> >

> > I wish you the very best of luck at what is one of the harder times on

> > the

> > CHARGE journey. It's all true that it does get easier in due course.

> >

> > Oh, and congrats on the birth of your baby boy by the way.

> >

> > Flo (UK)

> > Mum to - CHARGE - (6) and Elly (4)

> >

> >

[Guest guest]

love him, treasure him and expect great things from him!!!!

our son has amazed us many times!!

mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

Hello

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

[Guest guest]

>

> Hi,

> My name is . My wife recently gave birth to our first

child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some

complications

> with him. We were with him for just a few minutes before they

wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the

signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have

the

> disorder. Through the testing we have learned that he is

completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets

extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that

is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good

chance

> that we will lose him. We wonder what the average lifespan is for

a

> child with CHARGE. We wonder what kind of life he will have if he

is

> both blind and deaf. And a multitude of others. We both just

need to

> hear the truth about what we all can expect. Our doctors continue

to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

Dear and ,

Congratulations on your new baby boy Elijah, and welcome to the

Charge list..you have found the right place to go to ask questions

or advice...and just get great support..I have a 7yr. old son named

....we were told he would most likely be completely blind in

one eye and have limited sight in the other...(my husband and i

still laugh when he drops a mini M&M and picks it up

immediately,even when he doesn't have his glasses on !) He is

profoundly deaf but attends a Deaf/ Hearing Impaired kindergarten

program and is making great strides.Like most CHARGE kids

was born with multiple problems and those first few months are so

scary because one does not know what to expect,,He has made it

through 3 heart surgeries..his first at 3 days old, and is doing

quite well. He is a special child and the love of his mommy and

daddy's lives..Each individual CHARGE child is different as to their

degree of the specific issue...some may have mild hearing loss,while

another is proundly deaf...and so on..I know, as im sure we all do

on this list, what a hard time you are going thru now but hang in

there and keep asking questions..Along our " journey " we have dealt

with many,many doctors..some wonderful..some not so..they always

dont have all the right answers,so dont always take thier word if

you are not so sure they know what they're talking about..CHARGE is

a very complex syndrome and alot of doctors have never even seen a

CHARGER before.Try to think positive..these CHARGERS are known to

amaze everyone..even the doctors..they are strong willed survivors

and in my opinion a blessing from GOD!!

...Mom to (7yr.old CHARGER)

[Guest guest]

hi,

my name is brittney. i was pregnant with my son and was told of a few

complications. when i had him he was immediatly took to another hospital 300

miles away. i was then informed he had charge syndrome and digeorge syndrome. he

spent 8 months in the nicu intabated. he had 19 surgeries. i would like to share

more of my story if you are interested

Re: Hello

love him, treasure him and expect great things from him!!!!

our son has amazed us many times!!

mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

Hello

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

[Guest guest]

Hi Brittney and welcome to the listserv. I'd love to hear more about your

son. What's his name? Where do you live? 8 months intubated - that

must've been really rough! Looking forward to hearing more. How old is he

now?

www.chargesyndrome.info

>

> hi,

> my name is brittney. i was pregnant with my son and was told of a few

> complications. when i had him he was immediatly took to another hospital 300

> miles away. i was then informed he had charge syndrome and digeorge

> syndrome. he spent 8 months in the nicu intabated. he had 19 surgeries. i

> would like to share more of my story if you are interested

>

> Re: Hello

>

> love him, treasure him and expect great things from him!!!!

>

> our son has amazed us many times!!

>

> mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

> Hello

>

> Hi,

> My name is . My wife recently gave birth to our first child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some complications

> with him. We were with him for just a few minutes before they wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have the

> disorder. Through the testing we have learned that he is completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good chance

> that we will lose him. We wonder what the average lifespan is for a

> child with CHARGE. We wonder what kind of life he will have if he is

> both blind and deaf. And a multitude of others. We both just need to

> hear the truth about what we all can expect. Our doctors continue to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

>

[Guest guest]

-- Re: Hello

love him, treasure him and expect great things from him!!!!

our son has amazed us many times!!

mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

Hello

Hi,

My name is . My wife recently gave birth to our first child,

a beautiful baby boy. We quickly went from elation, to fear, to

heartbreak when the doctors told us that there were some complications

with him. We were with him for just a few minutes before they wisked

him off to the nicu. I was allowed to accompany hin there. We wer

later informed that the doctors felt that he showed many of the signs

of CHARGE syndrome.

Since that time we have had it confirmed that he does indeed have the

disorder. Through the testing we have learned that he is completely

blind, is completely deaf, has problems with swallowing, has small

heart issues, and small(but functioning) kidneys. He gets extremely

congested from the secretions that accumulate in the back of his

throat and nose. He has a very small right nare but it is not a

complete choanal atresia. These issues cause him to " DSAT " , that is,

his bloodstream does not carry the proper amount of oxygen that is

required for normal functioning of his organs.

Our little Elijah is our joy and heart but we have no idea what to

expect. He is only 25 days old. We have so many questions and

concerns that we are overwrought. We wonder if there is a good chance

that we will lose him. We wonder what the average lifespan is for a

child with CHARGE. We wonder what kind of life he will have if he is

both blind and deaf. And a multitude of others. We both just need to

hear the truth about what we all can expect. Our doctors continue to

give us the " we just don't know what to expect " kind of answers.

Any thoughts or insights would be very welcomed from anyone.

Thanks ahead of time,

and

[Guest guest]

well sorry to say he passed away march 16, 2004 he was 15 months old. he had a

long rough journey. his name was brent. his heart stopped. the doctors all said

he was deaf and was blind, but we proved them wrong. his oxygen level stayed

between 50 and 70 when not on oxygen. he always dsat. he had to have a feeding

tube in his intestines because he refluxed every 10 ccs that went in him. they

were going to do a nissin but his heart wasnt strong enough to keep getting put

to sleep. they couldnt operate on his heart because he wasnt stable enough. we

prayed all the time kept going to church they kept telling me they cant do

anything else but we had faith. he would pull out his ventalator and theyd have

to put it back in because he would code. one night believe it or not we were

standing there praying and i saw a light. they nexyt morning the hospital called

and woke me up to tell me he pulled his tube out and was breathen on his own. a

miracle. he got moved to the picu for a couple of months finally we got to take

him home after 8 months. we had to feed him through the tube go to doctors 3

times a week. we had 24 hour nursing he went back a couple of times. he did good

for the first couple months then his heart started acting up. then one day out

of no where it stopped. he was my miracle baby. he did everything the doctors

said he would, they dont know everything. just have faith and trust in god. i

know alot of things about charge syndrome and digeorge syndrome. if anyone has

any questions please ask. i love to talk about it....... brittney

Re: Hello

>

> love him, treasure him and expect great things from him!!!!

>

> our son has amazed us many times!!

>

> mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

> Hello

>

> Hi,

> My name is . My wife recently gave birth to our first child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some complications

> with him. We were with him for just a few minutes before they wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have the

> disorder. Through the testing we have learned that he is completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good chance

> that we will lose him. We wonder what the average lifespan is for a

> child with CHARGE. We wonder what kind of life he will have if he is

> both blind and deaf. And a multitude of others. We both just need to

> hear the truth about what we all can expect. Our doctors continue to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

>

[Guest guest]

brittney great to have you on the list he seemed l9ke a true fighter hugs

ellen

>

> well sorry to say he passed away march 16, 2004 he was 15 months old. he

> had a long rough journey. his name was brent. his heart stopped. the doctors

> all said he was deaf and was blind, but we proved them wrong. his oxygen

> level stayed between 50 and 70 when not on oxygen. he always dsat. he had to

> have a feeding tube in his intestines because he refluxed every 10 ccs that

> went in him. they were going to do a nissin but his heart wasnt strong

> enough to keep getting put to sleep. they couldnt operate on his heart

> because he wasnt stable enough. we prayed all the time kept going to church

> they kept telling me they cant do anything else but we had faith. he would

> pull out his ventalator and theyd have to put it back in because he would

> code. one night believe it or not we were standing there praying and i saw a

> light. they nexyt morning the hospital called and woke me up to tell me he

> pulled his tube out and was breathen on his own. a miracle. he got moved to

> the picu for a couple of months finally we got to take him home after 8

> months. we had to feed him through the tube go to doctors 3 times a week. we

> had 24 hour nursing he went back a couple of times. he did good for the

> first couple months then his heart started acting up. then one day out of no

> where it stopped. he was my miracle baby. he did everything the doctors said

> he would, they dont know everything. just have faith and trust in god. i

> know alot of things about charge syndrome and digeorge syndrome. if anyone

> has any questions please ask. i love to talk about it....... brittney

>

> Re: Hello

> >

> > love him, treasure him and expect great things from him!!!!

> >

> > our son has amazed us many times!!

> >

> > mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

> > Hello

> >

> > Hi,

> > My name is . My wife recently gave birth to our first child,

> > a beautiful baby boy. We quickly went from elation, to fear, to

> > heartbreak when the doctors told us that there were some complications

> > with him. We were with him for just a few minutes before they wisked

> > him off to the nicu. I was allowed to accompany hin there. We wer

> > later informed that the doctors felt that he showed many of the signs

> > of CHARGE syndrome.

> > Since that time we have had it confirmed that he does indeed have the

> > disorder. Through the testing we have learned that he is completely

> > blind, is completely deaf, has problems with swallowing, has small

> > heart issues, and small(but functioning) kidneys. He gets extremely

> > congested from the secretions that accumulate in the back of his

> > throat and nose. He has a very small right nare but it is not a

> > complete choanal atresia. These issues cause him to " DSAT " , that is,

> > his bloodstream does not carry the proper amount of oxygen that is

> > required for normal functioning of his organs.

> > Our little Elijah is our joy and heart but we have no idea what to

> > expect. He is only 25 days old. We have so many questions and

> > concerns that we are overwrought. We wonder if there is a good chance

> > that we will lose him. We wonder what the average lifespan is for a

> > child with CHARGE. We wonder what kind of life he will have if he is

> > both blind and deaf. And a multitude of others. We both just need to

> > hear the truth about what we all can expect. Our doctors continue to

> > give us the " we just don't know what to expect " kind of answers.

> > Any thoughts or insights would be very welcomed from anyone.

> >

> > Thanks ahead of time,

> > and

> >

> >

[Guest guest]

Hi Brittney

Thank you for talking about Brent. I am so sorry. This is a very sad story.I

cannot even imagine the pain of losing him. I am so scared this could happen

to and I just don't know if my son, his daddy could take it.He loves

him so much. He is the cutest and sweetest baby, such a fighter! He has been

in and out of the hospital all of his life, he is almost 9 months now. He

has had 3 heart surgeries, and yesterday another one to implant a pacemaker.

His heart also stopped a few days ago, and they are hoping the pacemaker

will prevent another episode. He has a nissen and is gtube fed. They think

one ear is deaf, and maybe the other one, but they are not sure. He has a

coloboma, but they think his vision is ok. He has brain abonormalities seen

on MRI and we don't REALLY know what that means, they tell us to be prepared

for the worst. But you are right, in that they are not always right and

these babies are really amazing. There are too many sad stories but these

angels also bring a lot of joy to the people who love them.

Take care,

Liz

-- Re: Hello

>

> love him, treasure him and expect great things from him!!!!

>

> our son has amazed us many times!!

>

> mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat

> Hello

>

> Hi,

> My name is . My wife recently gave birth to our first child,

> a beautiful baby boy. We quickly went from elation, to fear, to

> heartbreak when the doctors told us that there were some complications

> with him. We were with him for just a few minutes before they wisked

> him off to the nicu. I was allowed to accompany hin there. We wer

> later informed that the doctors felt that he showed many of the signs

> of CHARGE syndrome.

> Since that time we have had it confirmed that he does indeed have the

> disorder. Through the testing we have learned that he is completely

> blind, is completely deaf, has problems with swallowing, has small

> heart issues, and small(but functioning) kidneys. He gets extremely

> congested from the secretions that accumulate in the back of his

> throat and nose. He has a very small right nare but it is not a

> complete choanal atresia. These issues cause him to " DSAT " , that is,

> his bloodstream does not carry the proper amount of oxygen that is

> required for normal functioning of his organs.

> Our little Elijah is our joy and heart but we have no idea what to

> expect. He is only 25 days old. We have so many questions and

> concerns that we are overwrought. We wonder if there is a good chance

> that we will lose him. We wonder what the average lifespan is for a

> child with CHARGE. We wonder what kind of life he will have if he is

> both blind and deaf. And a multitude of others. We both just need to

> hear the truth about what we all can expect. Our doctors continue to

> give us the " we just don't know what to expect " kind of answers.

> Any thoughts or insights would be very welcomed from anyone.

>

> Thanks ahead of time,

> and

>

>