Re: A difficult decision

[Guest guest]

-

Welcome to the list!! You've come to the best place for support and

*real* information about CHARGE and it's affects on CHARGErs' lives.

Over two years ago, my husband & I were asked to make the same decision

for our daughter and this list helped us tremendously to make one that

gave us peace then and continues to give us peace now. I hope you are

able to get the same help and make the right decision for your son and

yourselves.

Our daughter's findings were different than your son's but, after hearing

from parents who's children had similar issues as our daughter and about

their quality of life, we decided to pursue the surgery. It was a difficult

surgery, but was a success. However, her little body could not survive the

after affects (likely due to the other affects of CHARGE) and she died a few

hours later at 13 days of age.

Please write back (onlist or privately .. debbie @ icus.com) if I can answer

any specific questions for you. From what I can tell, it seems that your

son's findings are quite different than Sara's but I will help if I can.

Best wishes and prayers,

Debbie

From the keyboard of nancyno5:

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus collosum

> and copolcephaly (diliated ventricles of the brain). There are other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

hi nancy, i would like to give you my 2 cents (or rather millon dollar answer

as well!) we call erika our million dollar+ baby. she was born almost 8

years ago, with all the CHARGE issues except G. we also were told she would be

blind, deaf, and we would be in and out of hospitals all our life. we also had

the option of " not treating her and letting God decide. " there was no choice

in our minds, but it has not been easy. has had over 30 operations.

after the 2nd heart surgery she arrested at teh age of 1 and had further

complications and we were given a 2nd chance to not continue with her life. she

was

in a coma and on life support. they wanted to pull the plug. after she

arrested again the did chest compressions at the bedside, it was at that point

they almost convinced us to give up. as they were doing the chest compressions

i

reached down to her and hugged her crying my eyes out and told her if she had

any thing left to give it now. I knew I could not fight the Drs much more.

As I said this to her (she was in a coma) they got a heart beat! she was

still in the coma, then they at least wanted a DNR. 2 days later she woke up,

smiled at us and blew us a kiss! since then has proven to us over and

over she is a fighter. Life hasnt been easy, but she has taught us so much

about

love and life. SHe gets tons of therapy, she is still trached (coming out

june 10th), walks with a walker, we travel all over to seek specialists.

Again , life is not easy, its darn right hard and upsettign at times, But

wow what an amazing child I have! We couldnt love anyone anymore. CHARGE

children are so full of love, determination. THis list has taught me so much,

and

made me realize how special we are to be given such special children.

Well, thats my thoughts!

Cathie, mom to , almost 8 CHARgEr

[Guest guest]

, welcome to the list!!! I cannot offer any advice, simply an ear for

listening or a shoulder to cry on. my son, Timmy, although he has his

issues, is not too medically involved so I can't help with those issues.

But my thoughts and prayers are with you and I'm sending hugs to you and

your family. I " m sure the decision you make, although it will be difficult

will be the right one.

mom to timmy 7.5 ChARGE, keegan 5, liam 2.5 wife to Pat

A difficult decision

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus collosum

> and copolcephaly (diliated ventricles of the brain). There are other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

>

>

>

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

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

,

Hello and congratulations on the birth of your twins... I would like to share a

little something with you...

We were told at the age of 2 months that Kennedy would be completely blind,

completely deaf and mentally retarded. None of this turned out to be true but

we did NOT know that back then. She did not have some of the things your

ei has: agenesis of the corpus collosum and copolcephaly (diliated

ventricles of the brain) or a tracheostomy, but she has bilateral colobomas,

bilateral bony choanal atresia, major heart defects, inability to suck or

swallow and she had to be and is still, tube fed. It all sounded pretty

horrific in those early days, the prognoses they gave us. I understand that the

doctors HAVE to give you what they feel is EVERY scenario but that was not the

case as it turned out for us.

I would like to invite you to go to:

http://personal.nbnet.nb.ca/gweir/kennedy.html which is Kennedy's page on our

web site - her whole life story is there pretty much as well as pictures from

those EARLY DIFFICULT days when you couldn't imagine what life would be like

right up til today. The decision is ultimately yours and I wish you much

strength as you go through the process to make that decision. I just wanted to

share Kennedy with you first. If you wish to contact me privately, my email is

gweir@... my phone number is .

Sincerely,

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

A difficult decision

Hello everyone,

I'm new to this board and would like to tell my story.

My twins were born May 5, 2003. Twin A is fine and home, but Twin B

is still in the hospital. He was diagnosed as having CHARGE.

He was transferred to another hospital for a possible tracheostomy

(sp?). After having all the specialist evaluate him, we were told

that he has a 95% chance of being mentally retarded. We were given

the option to continue treating him for his other problems or to give

him limited care and put him in the hands of God.

His list of disabilities include: single ventricle heart, coloboma

of the right eye, atresia of the choanae (he has a single nasal

passage and nostril), crooked spine, agenesis of the corpus collosum

and copolcephaly (diliated ventricles of the brain). There are other

minor things like club feet.

I would like to know if there are others out there who have had to

make a decision similar to this. My husband and I are emotional and

mental wrecks right now. I would just like to hear from others in

this situation and how you dealt with it.

Thanks.

Nicolas 3 1/2

Stefan 3 weeks

ei 3 weeks - CHARGER

[Guest guest]

-

From the keyboard of nancyno5:

>...

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. ...

Two additional things that I wanted to mention. First, IMHO the

information that most NICU doctors have on CHARGE is quite incorrect

on this count. We too were told that Sara would be mentally retarded,

as I suspect were most of the parents on this list. However, this

seems to be incorrect and related to the fact that IQ testing isn't

adequate for testing children with both vision and hearing issues.

Second, I'm sure many of the same people will respond, but if you'd

like to see the public responses to my queries, they're in the list

archives starting at message #20101 (that's my posting and others

used subject lines of " New baby " , etc). I think that some of what

was said to me then would be helpful to you now. I also received

*lots* of private replies from other parents who also had to make

the same choice. All of the messages were very helpful to us as

we made a decision that no parent should ever have to face. :-(

Best wishes and prayers,

Debbie

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

Hi ,

I thought I would just tell you about my son. He is an amazing person.

My son is 6 years old with CHARGE. He has had every aspect of CHARGE and

beyond. My son was a complete mess when he was born. I was told he would

be deaf and blind and would definitely be retarded. My son, however, doesn’

t have any brain abnormalities that they can see. He does have colobomas of

the retina in both eyes, 2 heart defects: right aortic arch which is benign

and pulmonary stenos is which he will probably need surgery for within the

next few years. He had bilateral bony choanal atresia (so bad that when he

was born they had to put him on the vent because he was totally blocked and

needed surgery right away for), he then had 3 more surgeries for it but

today his passages are nice and wide open. He was very small and is still

on the smaller side but he is 43 inches and 41 lbs which is the 10th

percentile. He had a micropenis and I am sure will never be able to have

children, and he has abnormal outer ears and is pretty much deaf. He also

has a facial nerve palsy, low tone and is very uncoordinated. In total, my

son has had 20 surgeries, which is probably light compared to some of the

other kids on this list.

He also had severe respiratory problems for the first 3 years and will

probably never will eat totally by mouth. I had 24 hour nursing care to help

me. I refused to trach him, but many times he came close. Right now he is

g-tube fed still 100%. He has swallowing problems. He has had 2

fundoplications for reflux. Both of his hands are malformed (he has 4

fingers on the left and 3 on the right). He was a major medical challenge.

I felt like all I was doing was trying to put out fires keeping just a

little bit ahead before the next tragedy happened with him.

is now 6 and reads on a first grade level (he is in Kindergarten) at

a school for the deaf and hard of hearing. He plays, talks in complete

sentences and carries on a conversation. His IQ is above average range and

he functions cognitively just below a kid of his age who is hearing. When

he was first born all I could wish for was that he was put out of his

misery. But all I saw was a baby who fought like crazy to stay alive. The

more I saw that he was a fighter the more I wanted to help him. I went all

over the country with him seeking medical help. Today, he is pretty healthy

and functions very well. He helps with his medical issues, understands what

all his medications do for him, and understands everything, even very

complex concepts. It is weird. He is excellent with directions and

remembers how to get somewhere when he has only been there once, and he is

only 6! He is excellent on the computer. He loves his play station. He is

great at arcade video games. He loves to read and owns every Dr. Seuss book

there is.

also gets tons of therapy. He always did. But it does pay off.

From my experience, the doctors can help you to a point, but they don’t know

it all. Every time I bring into see his ENT, he says makes

his heart jump. He can’t believe this kid is standing there talking to him,

because this Dr didn’t think was going to live. Most of the drs

also thought would be retarded or severely delayed, but in this

case, proved them all wrong.

Good luck to you and your husband.

Debbie Matasker mom to 6 w/CHARGE, 8, andra 3

A difficult decision

Hello everyone,

I'm new to this board and would like to tell my story.

My twins were born May 5, 2003. Twin A is fine and home, but Twin B

is still in the hospital. He was diagnosed as having CHARGE.

He was transferred to another hospital for a possible tracheostomy

(sp?). After having all the specialist evaluate him, we were told

that he has a 95% chance of being mentally retarded. We were given

the option to continue treating him for his other problems or to give

him limited care and put him in the hands of God.

His list of disabilities include: single ventricle heart, coloboma

of the right eye, atresia of the choanae (he has a single nasal

passage and nostril), crooked spine, agenesis of the corpus collosum

and copolcephaly (diliated ventricles of the brain). There are other

minor things like club feet.

I would like to know if there are others out there who have had to

make a decision similar to this. My husband and I are emotional and

mental wrecks right now. I would just like to hear from others in

this situation and how you dealt with it.

Thanks.

Nicolas 3 1/2

Stefan 3 weeks

ei 3 weeks - CHARGER

[Guest guest]

Hi ,

Welcome to this list. You will be SO happy that you found it. We

all are. Like others have said, when Saleah was born 5 years ago I

was given the WORST. They had told me that she would be severely

retarded, wouldn't walk until she was at least 5 if she EVER walked

at all, would be completely blind, completely deaf, would never eat

by mouth and that we could never really expect anything much from

her. WRONG!!!!

Saleah just turned 5 a week ago and is INCREDIBLE. If you didn't

know she had any health issues you would not be able to tell. She

has had 15 surgeries to date (10- choanal atresia, 1 g-tube, 1 ear

tubes, 1 dental, 1 open heart, and 1 cochlear implant) and there will

be more to come, but it has been so worth it. She started taking a

bottle and eating at 10 months, got her g-tube out at 11 months.

Started walking at 3 1/2. Absolutely NO signs of retardation. Her

vision is good. She got a cochlear implant a year ago and is hearing

now. She is just all in all doing WONDERFUL. She is in a deaf and

hard of hearing preschool and is one of the " leaders " in her

classroom. She fits in perfect with the other kids. She is small

for her age (people think she's about 2 or 3). But that's fine if

that's all that she has to worry about.

Nobody can tell you what you should do with your son, but just know

that when making your decision the doctors do tend to tell you

the " worst case scenario " just so that you are prepared for

anything. There were times where I wanted Saleah to just be healthy

and normal, but now that I look back on everything, she has taught me

SO much about life and about the true love that you can have for

someone and she has definately made me a STRONGER person through all

of this. And I believe that she is going to be a very strong person

herself because she is a true fighter and never gave up on herself.

There were times when I know she did not want to do something a

therapist was trying to get her to do, but she did it anyway, even

crying through it sometimes. But she never gave up on herself. I

think that is a big thing with these special kids, they are all TRUE

FIGHTERS.

If you ever need someone to talk to please feel free to e-mail me

here or directly at KEF1972@...

Good luck with everything.

Kim

mom to Devin 12 yrs. and Saleah 5 yrs. (CHARGE)

[Guest guest]

, Just like , we didn't know if Timmy would hear, see, or be

" normal " whatever that is, but Timmy has overcome more in his life, mostly

nose and ears, than any child should have to endure. And it's no where

close to what most of our wonderful children go through, but they are strong

children and go beyond our wildest dreams. I never thought he would walk,

but he did, it just took him 3.5 years to do it.

I guess what I'm trying to stress here is, not all the problems are the

same, some are, but these kids will do great things in their own right.

they and we fight for everything--almost --we have or achieve, but that just

makes it all the more special.

I don't know what's in store for your child, but in my opinion, everyone

deserves to prove the drs. wrong, and these kids do, over and over again!!!

good luck,

A difficult decision

Hello everyone,

I'm new to this board and would like to tell my story.

My twins were born May 5, 2003. Twin A is fine and home, but Twin B

is still in the hospital. He was diagnosed as having CHARGE.

He was transferred to another hospital for a possible tracheostomy

(sp?). After having all the specialist evaluate him, we were told

that he has a 95% chance of being mentally retarded. We were given

the option to continue treating him for his other problems or to give

him limited care and put him in the hands of God.

His list of disabilities include: single ventricle heart, coloboma

of the right eye, atresia of the choanae (he has a single nasal

passage and nostril), crooked spine, agenesis of the corpus collosum

and copolcephaly (diliated ventricles of the brain). There are other

minor things like club feet.

I would like to know if there are others out there who have had to

make a decision similar to this. My husband and I are emotional and

mental wrecks right now. I would just like to hear from others in

this situation and how you dealt with it.

Thanks.

Nicolas 3 1/2

Stefan 3 weeks

ei 3 weeks - CHARGER

[Guest guest]

-

Oh my, I'm teary-eyed after reading all of the replies to you. I can't imagine

being in your shoes. When Aubrie was born 5 years ago, we were given a bleak

prognosis also. She couldn't suck and swallow, had heart surgery at 8 days old,

was tube fed til age 1.5 yrs or so... We didn't know if she could see or hear,

if she would ever be able to sit up or walk, eat or talk.

Now she is ready for kindergarten. She is a beginning reader. She had her

first dance recital and was an absolute star.

She is talking well enough to argue with her brother. The neighbor kids come

over to play daily. She got hearing aids at age 3, glasses at age 1. One eye

has virtually no vision, while the other is near normal. One ear has

mild-moderate loss, the other is mod-severe. She acts pretty much like a

normally hearing person with her aids on. She can't localize sound well and

misses some things. After many tears wondering how I would ever get her to eat,

she now chomps a chicken leg like a pro.

Aubrie does not have the brain complications that you mentioned in your son. At

least, we don't know about it if she does. All of ei's conditions sound

manageable except the brain things. It's not that they are big problems -- I

just don't know anything about them. I think the biggest thing to know from all

of our stories on the list is that the prognosis is usually much worse than what

actually develops. However, we don't know your son and no one knows what the

future holds for him.

I recall a profound moment in the hospital elevator with my husband when we both

acknowledged our fears that Aubrie would not survive. We couldn't imagine what

life held for us and how we could manage with what was to come. It was a long

time before I felt like I had my life back. Those early years were filled with

doctor appointments, surgical procedures, therapy appointments, etc. It was

stressful to say the least. As far as CHARGE goes, Aubrie does not have many of

the major complications that some of the other kids do. I thought our life was

hard, but I can't imagine what some others have been through. Now, we live a

very " normal " life. Aubrie is a delight. She amazes us daily.

As Debbie, I think, said, no parent should be faced with such a decision.

Follow your heart. Whatever you decide, you belong to our CHARGE family now

and we are here for you.

Michele W

mom to Aubrie (5 yrs) CHaRgE and (11 yrs)

A difficult decision

Hello everyone,

I'm new to this board and would like to tell my story.

My twins were born May 5, 2003. Twin A is fine and home, but Twin B

is still in the hospital. He was diagnosed as having CHARGE.

He was transferred to another hospital for a possible tracheostomy

(sp?). After having all the specialist evaluate him, we were told

that he has a 95% chance of being mentally retarded. We were given

the option to continue treating him for his other problems or to give

him limited care and put him in the hands of God.

His list of disabilities include: single ventricle heart, coloboma

of the right eye, atresia of the choanae (he has a single nasal

passage and nostril), crooked spine, agenesis of the corpus collosum

and copolcephaly (diliated ventricles of the brain). There are other

minor things like club feet.

I would like to know if there are others out there who have had to

make a decision similar to this. My husband and I are emotional and

mental wrecks right now. I would just like to hear from others in

this situation and how you dealt with it.

Thanks.

Nicolas 3 1/2

Stefan 3 weeks

ei 3 weeks - CHARGER

[Guest guest]

Hi and Welcome,

My son Adam is now 12 yrs old and has had 12 surgeries. We were told he may

not walk, he RUNS! Also he was blind but can pick a hair off your face. He

has good hearing in one ear. He has always been G-tube fed but is in the 100th

percentile for weight & about 35th for height. He cannot speak but is slowing

learning sign launguage. His teacher tells us how smart he really is but has

problems with communication which can be so frustrating for him. I believe they

all have wonderful potential and can thrive in this world. I wish the best for

you and your child.

Best to you,

Terri Mom to 15 15 Adam charger 12 & 6

[Guest guest]

Hi ,

When was born, they did told us he had microcephaly and had too

much fluid around his brain. They painted a very bleak picture,

spoke about other possible brain findings on a CT scan...At 3 months,

we repeated all the tests and they found they were

nonsignificant.... " typical " . They couldn't explain it except to say

that maybe the fluid distibution was differnet because my son was

born with a tracheoesophageal atresia and fistula. WHile came

close to needing a trach, he was never trached or vented. He also

has choanal stenosis on one side only.

Currently, is bright, sociable and amazing little boy. He is 2

1/2 and although he has developmental delays (delayed walking,

talking,...) he has blown the doctors away...He is incredibly bright,

inquisitive and " spunky " ...

There are certainly no easy decisions but my thought are certainly

with your family as you need to make some tough ones. My one advice

would be to get a second opinion on doing the CT scans and reading

them...let two people give you the same finding rather than just one.

Barbara

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin

B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to

give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus

collosum

> and copolcephaly (diliated ventricles of the brain). There are

other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional

and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

[Guest guest]

-

Some more thoughts that might help you in your decisions... I really don't want

to confuse you or make things worse. I truly support whatever decisions you

make. No one can know what is " best " . Please take my words to heart if they

help and discard them if they don't.

When Aubrie was born, I had an older son who was then 5. Aubrie had an identity

to us before birth. We had named her in utero, I'd sent an email announcement

of her upcoming birth, etc. So when she arrived with all of her problems, I

felt like I already had bonded with the real her underneath all of that. For a

while, she seemed like one big bundle of medical problems and it was hard to

find time or energy to focus on the baby in there. All of our energy was spent

on survival.

One thought that helped me a lot was to consider if my son had been suddenly

disabled by accident or illness. What would I do? Would I give up on him? At

what point would I deny treatment? What if it was him in that hospital instead

of her? The only difference would be that he would have had a presence in my

life before he was struck -- Aubrie didn't have the opportunity to have a

presence before CHARGE struck her. But there was still a " whole " and worthy

being in there somewhere. What if my husband or I were injured and left

disabled? At what point would we withhold treatment?

These are very tough and personal decisions. You will be doing some deep soul

searching for years to come regardless of the outcome for ei. Your beliefs

about God will be tested to the extreme. Wasn't it Gods hands that created

ei and allowed him to be born? Isn't it God that gave the doctors their

knowledge and skill? Who can really know what God's will is?

I remember people saying that Aubrie was born to us because God knew we were

special people who could care for her. Well, you know what? My God wouldn't do

that. If I'd known my reward for being a good person was to have my child be

disabled, I might have considered being a " bad " person. And, really, disabled

children are born to all kinds of people every day.

Another person recently told me that she would probably be punished for a poor

decision regarding a disabled client in that God would give her a disabled

grandchild. My reply was that my God didn't work that way. I certainly don't

see Aubrie as a punishment to me or my family or as a soul who deserved in some

way to live a difficult life.

In the first days after Aubrie's birth, the pediatrician suggested the option of

institutionalizing her because we'd never be able to handle her care. Look at

her now. No way does she belong in an institution of any kind! On paper, she

is frightening -- so many complicated diagnoses. But in real life, she's a

delight. CHARGE has a full range of impact on people. There's no way of

telling what the outcome will be for ei -- but it's very difficult to get a

valid foretelling in infancy.

You will find your way through this. I know you are a wreck right now. That

may seem like it will last forever. Believe me, it won't. You can't see the

light at the end of the tunnel, but it's there -- just around a few nasty

winding corners.

Hang in there.

Michele W

mom to Aubrie 5 yrs

A difficult decision

Hello everyone,

I'm new to this board and would like to tell my story.

My twins were born May 5, 2003. Twin A is fine and home, but Twin B

is still in the hospital. He was diagnosed as having CHARGE.

He was transferred to another hospital for a possible tracheostomy

(sp?). After having all the specialist evaluate him, we were told

that he has a 95% chance of being mentally retarded. We were given

the option to continue treating him for his other problems or to give

him limited care and put him in the hands of God.

His list of disabilities include: single ventricle heart, coloboma

of the right eye, atresia of the choanae (he has a single nasal

passage and nostril), crooked spine, agenesis of the corpus collosum

and copolcephaly (diliated ventricles of the brain). There are other

minor things like club feet.

I would like to know if there are others out there who have had to

make a decision similar to this. My husband and I are emotional and

mental wrecks right now. I would just like to hear from others in

this situation and how you dealt with it.

Thanks.

Nicolas 3 1/2

Stefan 3 weeks

ei 3 weeks - CHARGER

[Guest guest]

Dear ,

My thoughts and prayers are with you on this.

The others in the group are right, only you can make the decision as to

whether to go ahead with surgery or not. The decision is a really hard one

and there is probably no right answer. But I can say to you that when our

daughter Ellen was born almost 18 years ago, we were told that she would be

totally blind and profoundly deaf, severely mentally retarded and would die

by age 9 months. She too had enlarged ventricles etc.

The good side of the story is that, 18 years later, she is a bright, happy

girl who is in year 11 at school and hopes to do further education when she

finishes. She is severely deaf and visually impaired but reads and speaks as

if she is not. Her computer skills are far better than mine and she a

successful and loved member of her community.

The bad side is the suffering she endures still. She has never been able to

eat orally but has always been tube fed, or worse, intravenously fed, she

can't walk because her sight and balance are too bad. She has had many

horrible surgeries and needs more. In fact. she is having a major gut op

next week. She'll always be reliant on us for her care in a realistic sense.

If you asked Ellen, she would tell you that she'd much rather be alive, she

enjoys her life. Even when things have been absolutely terrible, she's never

wanted to die, although she has nearly done so on a number of occasions. She

is a rare individual who is an inspiration to those around her.

As her mother, who has seen for 18 years the effort that living has imposed

on her, has seen the drain on our other child, the drain on us and our

marriage and emotional and financial resources, if you asked me is it worth

it, the answer is that for us, it has been and is, in spite of everything.

BUT I would never presume to answer that for another human being and I think

that whatever you and your family decide will be the right answer for you.

Don't let the doctors or your extended family or your church or whatever

pressure you into making a decision you don't want to make; they're not the

ones that will have to live with it for the rest of their lives. The truth

is that there is no " right " answer to your dilemma, and that any

decisions you make, if made with as much information as you can gain and

from the standpoint of your love for your child are the best decisions you,

or any of us can make.

With Love,

Marea Howe

A difficult decision

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus collosum

> and copolcephaly (diliated ventricles of the brain). There are other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

>

>

>

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

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

-

My daughter Berkeley turned 4 this month. Soon after she was born the head

of the pediatric unit that she was in came and told me that it would be best

not persue the heart surgery she needed, as she would most likely lie in a

bed all her life. Her retardation was too severe for anything else. He

" kindly " suggested that I take her home and let nature takes it's course.

Berkeley was diagnosed with agenis of the corpus collusum, an undersized

brain and severe hydrocephally caused by a Dandy- Cyst. In addition

she is hard of hearing, blind in one eye and severely visually impaired in

the other. She was g-tube fed, oxygen dependent for a while and constantly

had pneumonia. She had 16 surgeries by her 3rd birthday.

Last week her special education pre-school teacher shared with me that he

was recommending she be mainstreamed into our local neighborhood

kindergarten next fall. She can say the pledge of allegiance like a pro

and has regularly been in trouble lately for pushing her little brother when

he makes her mad. There are many parents on this list that remeber when I

was new to this list and asking many of the same questions hat you are

asking now.

I wish for you all the strength that friends and family gave to me when we

were faced with the same decision.

Michele Hatfield, mom the 8, Berkeley 4, & Drake 19 mo.

A difficult decision

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus collosum

> and copolcephaly (diliated ventricles of the brain). There are other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

>

>

>

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

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

-

Wow! Marea's response to you was perfect! Finally, a reply from someone whose

child seems more like what you are dealing with in ei. She is 18 years into

her journey and can give you both sides of the situation. She is absolutely

right that there is no " right " answer. You will never know if what you did was

the " right " thing, but you can't do the " if only " thing. As Marea said, gather

all the information you can and use that to make a loving choice for ei,

your other children, you, and your spouse. Sometimes, all of our amazing

medical advancements can put us in very complicated situations. A generation

ago, limited medical knowledge may have made your decision for you.

You and your family are in my thoughts and prayers. I wish you comfort.

Michele W

Aubrie's mom

A difficult decision

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus collosum

> and copolcephaly (diliated ventricles of the brain). There are other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

>

>

>

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

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Hi Michele,

I'm glad you thought my response was ok. In the end, we really can only do

what we believe to be best and then live with whatever the consequences are.

I found that to be a very hard lesson and still have trouble with it at

times, but I've found that, if you apply love to the equation, the decision

will be bearable, even if it wasn't what you would have chosen for yourself

or others. Wisdom is forced upon us when we have children like ours!

Marea

A difficult decision

>

>

> > Hello everyone,

> >

> > I'm new to this board and would like to tell my story.

> >

> > My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> > is still in the hospital. He was diagnosed as having CHARGE.

> >

> > He was transferred to another hospital for a possible tracheostomy

> > (sp?). After having all the specialist evaluate him, we were told

> > that he has a 95% chance of being mentally retarded. We were given

> > the option to continue treating him for his other problems or to give

> > him limited care and put him in the hands of God.

> >

> > His list of disabilities include: single ventricle heart, coloboma

> > of the right eye, atresia of the choanae (he has a single nasal

> > passage and nostril), crooked spine, agenesis of the corpus collosum

> > and copolcephaly (diliated ventricles of the brain). There are other

> > minor things like club feet.

> >

> > I would like to know if there are others out there who have had to

> > make a decision similar to this. My husband and I are emotional and

> > mental wrecks right now. I would just like to hear from others in

> > this situation and how you dealt with it.

> >

> > Thanks.

> >

> >

> > Nicolas 3 1/2

> > Stefan 3 weeks

> > ei 3 weeks - CHARGER

> >

> >

> >

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

in

> the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

> >

> >

[Guest guest]

,

My heart aches for you. We had twins also. has CHARGE and is

with us. also was suspected to have CHARGE with a hypoplastic

left heart. She did not survive and we chose to put her in God's

hands. After we had made our decision, the doctors told us they felt

that she would not have made it through surgery. I am so glad that we

had 36 hours with her to hold and snuggle with before she died

peacefully in my arms. Quality of life was a major factor in our

decision, both for her and the rest of our family. I have never

regretted our decision.

No matter what you decide, it is a personal decision. You will know

what the best thing is for you and for your family.

Lots of hugs,

G

Mom to Makenzie, 11, . 7, CHARGE; , 1/31/96-2/6/96 and

Kaci,3

> Hello everyone,

>

> I'm new to this board and would like to tell my story.

>

> My twins were born May 5, 2003. Twin A is fine and home, but Twin B

> is still in the hospital. He was diagnosed as having CHARGE.

>

> He was transferred to another hospital for a possible tracheostomy

> (sp?). After having all the specialist evaluate him, we were told

> that he has a 95% chance of being mentally retarded. We were given

> the option to continue treating him for his other problems or to give

> him limited care and put him in the hands of God.

>

> His list of disabilities include: single ventricle heart, coloboma

> of the right eye, atresia of the choanae (he has a single nasal

> passage and nostril), crooked spine, agenesis of the corpus collosum

> and copolcephaly (diliated ventricles of the brain). There are other

> minor things like club feet.

>

> I would like to know if there are others out there who have had to

> make a decision similar to this. My husband and I are emotional and

> mental wrecks right now. I would just like to hear from others in

> this situation and how you dealt with it.

>

> Thanks.

>

>

> Nicolas 3 1/2

> Stefan 3 weeks

> ei 3 weeks - CHARGER

>

>

>

[Guest guest]

One could assume that you decision is like a bomb, you can stop the

bomb and save a whole lot of trouble or you could let it go off. It

isnt a win or lose situation. Understanding the situation I would

like to give my perspective of it. As many of you may already know Im

a Charge adult, and a college student majoring in Political Science.

I am majoring in this field so I can travel around and encourage

families to give children who did not have the same suuportive

parents Ihad. My parents were toldthat Iwould be a walking disaster.

I would notwalk,talk or be able to carry a normal life.

On the contrary my mom, my dad needed a son to carry on thefamily

name and my sisters needed a brother to beatup on and so on.....

Likethe bom my parents had twodecisions, they could turn me off by

either getting rid of m,butthey knew iftehy did they wouldnt feel

good about it. this asthe bomb exploded there was a different

consequece. here I am today I affected the lives of manypeople and

intend tokeep this pattern.

But anywaythat is myopinion,.

Thanks

[Guest guest]

Hi!

I too and new to the group and CHARGE syndrome. I am a NICU nurse with a MS

in psy. My son was born 7/02 with CHARGE. He had choanal atresia, PDA, VDS,

ASD, seizures, micropenis, bilateral colobomas, and failed 3 hearing

screenings. He subsequently passed a hearing screening, but still seems to have

some

deficit. His eye sight is present, but questionable. Some of his heart issues

have resolved, but he will have to have a " plug " when he is older/bigger. He

has subsequently developed hypopituitary problems. His micropenis was

treated with testosterone, but his testes are no longer descended and will

probably

require surgery. He has had two surgeries on his nose and tubes in his ears.

I sometimes feel like I am at work with all of his medical issues. I was

told he would probably be deafblind and retarded. He demonstrates evidence of a

normal IQ. All that said....bottom line .....he is the sweetest boy and a joy

for our family. He has the biggest smile. Whatever your decision, it might

help to think about what I constantly remind myself....we have expectations

for our children, right or wrong, but they will be who they are meant to be. My

job is to love my children as they are and open my heart to the gifts they

are meant to give me. The doctors don't know everything. Trust your instincts,

what your heart tells you when you look at your child. I wish you and your

family strenght in your decision and peace once you make it!

Kim McKie

mom of CHARGEr , 9months; le, 13 years; and Caroline, 4 years.

PS My understanding of the mental problems associated with CHARGE is that

they are the result of hearing and visual deficits which can be compenstated for

with stimulation of the other senses. I don't know if the brain changes you

mentioned would impact mental capacity.

[Guest guest]

,

I really feel for you. My husband and I found out our daughter had

medical problems when I was 4 months pregnant. It started with a

black hole in her brain. The Drs told us we had 4 weeks to decide

on whether to terminate the pregnancy. We don't believe in

abortion, but it was very difficult to come to terms with having a

child with special needs. To say we prayed alot is an

understatement. My chant became " Thy will be done " . It is the

hardest prayer I ever had to pray. Surprisingly, when my husband

and I told them we were going to continue the pregnancy, they were

extremely respectful and ensured we got the best possible care.

My daughter spent a couple of months in the NICU with the " we don't

know if she will make it " and " she will never walk or communicate,

she will be a vegtable " and " if she survives you should

institutionalize her. " Even when she came home things were very

touchy as to if she would continue to breath. At 18 months, she had

a really bad stay at the hospital and we almost lost her several

times. The Drs talked to us about a DNR, etc.

I don't mean to overwhelm you, but just to let you know that things

didn't look good.

Now Rebekah is a spunky 5 year old who I decribe as " a normal 5 year

old who happens to have a lot of artifical body parts. " She is

physically very active, she is a lot smarter than the Drs actually

thought, and she is wonderful! When we return to the Drs' offices

they can't believe she is the same scrawny baby they saw in the

hospital. BTW, that black hole was cerebellar hypoplasia (her brain

didn't grow to fill the space in the area which controls among other

things - breathing.) At 9 month old, she had a CT scan and it had

resolved itself.

I know it is a hard decision, but praying will guide you in the

right direction. Remember the footprints story. This is one of

those carrying times.

I will pray for you and your family.

Paz,

[Guest guest]

Dear ,

Prenatally, we received some news that was very disturbing for myself and

husband. That our baby was suspected to have a Dandy Malformation (a

brain

malformation). We found this out during the 3rd ultrasound, also prior to

this ultrasound we were told that our baby was to have a bilateral cleft lip and

palate. Unfortunately, at that time, our dreams took a major change and made

my first pregnancy of 13 years very stressful. We continued to have monthly

ultrasounds to monitor the Dandy Malformation. Each ultrasound revealed

" a

variation from normal " of the brain or as the technician referred this

variation as a Dandy Malformation. I did little research, because I knew

that

I couldn't change it, if that was true.

During 's first 24 hours, she went through a battery of tests. It was a

very bittersweet day for us, as the CAT Scan showed no evidence of a Dandy

Malformation. But, she was diagnosed as having a " small brain " or

microcephaly. Unlike many families here on the list, specialists never told us

what

would not be capable of. They were very supportive early on. However the

geneticist that observed (day 1) warned us of a possible early death.

Early on he suspected a syndrome and when was about 8 months he felt her

characteristics/findings/condition fit CHARGE. I had little time to do much

research those first months, but when I did, I read of microcephaly. IT was the

worst thing I did, on hind sight I wish I would have directed my ambitions

towards positive thoughts. I also wasn't completely convinced that the Dandy

wasn't there until we had another CAT Scan when she was about 7 months. We

were very glad to put closure on that.

had few positive responses, with little progress during her first year.

She gave us her first true smile when she was about a year old. It was a

difficult year. We tried to handle things as normal as possible. We were told

that

had impaired vision and hearing those first days and the geneticist

offered some really good advice: " Provide her with as much stimulation as you

can, even if she's not picking up a lot of it.'' Our efforts have been very

rewarding.

Now is 2 1/2 years old and is doing very well. She is a very bright,

social and funny little girl. Yesterday we held her annual IFSP meeting.

proudly signed the alphabet, her first and last name and counted to ten. It was

a delight! She has delays in gross motor and self help skills. She brings us

immense joy, although there have been many heartaches a long the way.

Congratulations on the birth of your twins. We're wishing you strength and

courage...

Jan Hiltner Mom to (CHa?RGE 2 1/2 years, bilateral cleft lip and

palate) wife to

MN

[Guest guest]

Jan,

Just a FYI. They diagnosed my daughter with a Dandy Cyst while I was

pregnant. After her first MRI at 2 days old, they said it was cerebellar

hypoplasia (which I would think might fall under microcephaly - any of you

professionals are free to correct me.) At 9 months her brain had grown to fill

the space. Interesting.

Re: A difficult decision

Dear ,

Prenatally, we received some news that was very disturbing for myself and

husband. That our baby was suspected to have a Dandy Malformation (a

brain

malformation). We found this out during the 3rd ultrasound, also prior to

this ultrasound we were told that our baby was to have a bilateral cleft lip

and

palate. Unfortunately, at that time, our dreams took a major change and made

my first pregnancy of 13 years very stressful. We continued to have monthly

ultrasounds to monitor the Dandy Malformation. Each ultrasound revealed

" a

variation from normal " of the brain or as the technician referred this

variation as a Dandy Malformation. I did little research, because I

knew that

I couldn't change it, if that was true.

During 's first 24 hours, she went through a battery of tests. It was a

very bittersweet day for us, as the CAT Scan showed no evidence of a Dandy

Malformation. But, she was diagnosed as having a " small brain " or

microcephaly. Unlike many families here on the list, specialists never told us

what

would not be capable of. They were very supportive early on. However the

geneticist that observed (day 1) warned us of a possible early death.

Early on he suspected a syndrome and when was about 8 months he felt her

characteristics/findings/condition fit CHARGE. I had little time to do much

research those first months, but when I did, I read of microcephaly. IT was

the

worst thing I did, on hind sight I wish I would have directed my ambitions

towards positive thoughts. I also wasn't completely convinced that the Dandy

wasn't there until we had another CAT Scan when she was about 7 months. We

were very glad to put closure on that.

had few positive responses, with little progress during her first year.

She gave us her first true smile when she was about a year old. It was a

difficult year. We tried to handle things as normal as possible. We were told

that

had impaired vision and hearing those first days and the geneticist

offered some really good advice: " Provide her with as much stimulation as you

can, even if she's not picking up a lot of it.'' Our efforts have been very

rewarding.

Now is 2 1/2 years old and is doing very well. She is a very bright,

social and funny little girl. Yesterday we held her annual IFSP meeting.

proudly signed the alphabet, her first and last name and counted to ten. It

was

a delight! She has delays in gross motor and self help skills. She brings us

immense joy, although there have been many heartaches a long the way.

Congratulations on the birth of your twins. We're wishing you strength and

courage...

Jan Hiltner Mom to (CHa?RGE 2 1/2 years, bilateral cleft lip and

palate) wife to

MN

[Guest guest]

they believe my husband has CHARGE as well as our two sons and my husband is

a great man and very scholarly. He has a Masters in History and is a

Community College Instructor. He is hoping to get his Phd in a few years. He

has

over come alot but he is a very awesome man and a great inspiration for my sons

so they won't use this syndrome as an excuse to not be the best they can be.

Liz

SAVE 20% on Gasoline  <A

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[Guest guest]

Liz,

My gosh I have missed you on our list I don't recall seeing anyone who

had a husband and 2 sons with CHARGE. How do you know this? A long while ago

we had a specialist draw some blood from my husband myself my daughter and my

son with CHARGE. He called back one night while I was at work and said my

daughters and mine looked ok but they were looking again at my husband and sons.

We never heard another word. I sure wish they could narrow down the cause.

[Guest guest]

My husband has had several things that make him appear like he has CHARGE,

cleft palate and lip, hearing loss, balance issues, and optic nerve defects. He

also didn't walk until age 2. Dr. Lalani is still wanting to run tests on him

to make sure but he fits the mold, my son Kai, 2 years old, was diagnosed a

year ago because he has hearing loss, choanal atresia, developement delays,

swallowing difficulties, balance issues, defects in the inner ear and a short

optic nerve. Our son , 5 months old, has a cleft palate and lip, missing

his semi circular canal in his right ear and possible hearing loss, we won't

know til he has his repair done in a few weeks because he has constant ear

infections. He also has a gbutton because he has swallowing issues as well.

They are still monitoring his size because he was almost 9lbs at birth but at 4

months was only 12 lbs. But he was hospitalized for a while which caused him

to lose some weight. Dr Lalani is going to monitor them alot to see how they

progress also, Kai has some problems with undescended testes as well. He is

having surgery for that at the end of the month as well. Kai himself has

endured 13 surgeries, 11 of which were his first year. It is tough but worth it

because they are wonderful loving children.

Liz

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