Have a ? to all members

[Guest guest]

I was aware of 2 Chrystine's 2 heart defects and also multicystic kidney

disease. It took 6 months to make the diagnosis.

Chrystal

Chrystine 1 year old, CHaRGE

Arleigh, 4

Silas, 1 month

[Guest guest]

I was wondering if the charge syndrome was a surprise when your child

was born or was it know before delivery? Did they pick up the heart

problems if there was any? I am trying to figure a couple things out

so any responses will help greatly.

Thanks Nadine mother of Austin 1mo. charger and 2yrs

[Guest guest]

Nadine,

We didn't know a thing so yes, it was the biggest surprise of our lies.

They didn't pick any heart defects (even though almost half her heart was

missing) but that doesn't surprise me with my local hospital.

www.chargesyndrome.info

>

> I was wondering if the charge syndrome was a surprise when your child

> was born or was it know before delivery? Did they pick up the heart

> problems if there was any? I am trying to figure a couple things out

> so any responses will help greatly.

>

> Thanks Nadine mother of Austin 1mo. charger and 2yrs

>

>

>

--

" 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]

For me and most of the parents I have met, there was no sign of any issues...

I know that I was on bedrest for a month prior to Maxwell's early arrival and

they were doing numerous ultrasounds on him to ensure his health, growth, etc.

since my water ruptured early. They kept saying how great he looked...how

strong his heart was, etc. Turns out, he had Tetralogy of Fallot, choanal

atresia, etc. etc. Some of the " defects " (I like to call them " quirks) are

difficult to detect in utero.

nkatsimmons wrote:

I was wondering if the charge syndrome was a surprise when your child

was born or was it know before delivery? Did they pick up the heart

problems if there was any? I am trying to figure a couple things out

so any responses will help greatly.

Thanks Nadine mother of Austin 1mo. charger and 2yrs

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

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

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[Guest guest]

We certainly didn't know of CHARGE. My daughter is 22 so this is ages ago

and is why we knew little. She was diagnosed with the coloboma, choanal

atresia, reflux, ear abnormalities, etopic kidneys and such.

At age 14 we went too another geneticist and with one look they said CHARGE.

With that they did an echo on her heart and found a PDA. It was fixed then.

Life for many is better now as there is more information. Don't worry about

not knowing. You find out and then move on.

Best wishes on this journey.

Bonnie, Mom to a 24, Patty CHARGE 22 and wife to

[Guest guest]

I had NO idea either! I, too, delivered my daughter two months early...who

knows, it's either because she was a twin (I went into preterm labor at 26

weeks), or the CHARGE. The only " flag " we saw, was that I had polyhydramnios

(too much water inside the bag). But, with the pregnancy of my first child,

I had the same thing...and he is typical! So, we wrote it off as soon as

developed. We watched it, but they also said her heart and stomach looked

good. They kept telling me she was swallowing because there was fluid in her

belly. I'm not sure how that could have happened, because her esophagus did

bot go to her stomach; it was a blind pouch (which is why I developed

polyhydramnios). So, although they said she looked good, she was born early,

with a TEF (esophagus connected to her airway), coarc of the aorta, and of

coarse CHARGE. I was in shock.

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

4 years, married to the best daddy in the world for 9 years!

[Guest guest]

Amy:

I was the same with . Nothing remarkable up to the emergency

c-section at 32 weeks. One week before she was born, I had a small " leak "

and was not allowed up to even use the restroom. In the hospital for that

week, I had numerous ultrasounds and non-stress tests done. Nothing ever

showed up. had a large ASD and choanal atresia, etc. The week

prior to going into the hosptial, a routine ultrasound only showed a slight

increase in fluid.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Re: Have a ? to all members

For me and most of the parents I have met, there was no sign of any

issues...

I know that I was on bedrest for a month prior to Maxwell's early arrival

and they were doing numerous ultrasounds on him to ensure his health,

growth, etc. since my water ruptured early. They kept saying how great he

looked...how strong his heart was, etc. Turns out, he had Tetralogy of

Fallot, choanal atresia, etc. etc. Some of the " defects " (I like to call

them " quirks) are difficult to detect in utero.

nkatsimmons wrote:

I was wondering if the charge syndrome was a surprise when your

child

was born or was it know before delivery? Did they pick up the heart

problems if there was any? I am trying to figure a couple things out

so any responses will help greatly.

Thanks Nadine mother of Austin 1mo. charger and 2yrs

Amy McKinley

Mom to MIGHTY MAX -- cHArGE, 15 months old (13 months corrected)

maxupdate.blogspot.com

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

We have the perfect Group for you. Check out the handy changes to Yahoo!

Groups.

[Guest guest]

Hello

I am not the mom but I am the grandma. I do know that it was a TOTAL

surprise when was delivered, and when the NICU doctor mentioned Charge,

we didnt even know what that was. I had never ever heard of this syndrome

before, and I had worked in the medical field for many years!

The ONLY thing that Racheal was told is that the baby was " turned " and that

was the reason they did a C.Cection. But the first thing that was said when

he was delivered was the small size, he was less than 5 pounds. This too was

a surprise because all along, " things were great, she was told he would be

large like her previous child, maybe. Then AFTER the delivery, came the

shock, Tetralogy of Fallot, coloboma, they could not feel his testicles (now

they have dropped, but he has a hydrocele that will need to be corrected

with surgery when he is done with the more urgent surgeries, like the heart,

and the meningecele in his back, and the spot of his skull that will not

fuse on its own. One thing that I remember is the OB saying " in retrospect,

I guess I should have looked at his heart closer " ...What?? you mean, this is

an option? I am still confused about all this, because I know that

Ultrasounds can even look into the verntricles of the brain, the heart, and

many other things that could have been a Red Flag??

I hope this helps you.

Liz, grandma. He is now almost 4 months old and is at Doernbecher

hospital in Portland recovering from his heart surgery.

-- Have a ? to all members

I was wondering if the charge syndrome was a surprise when your child

was born or was it know before delivery? Did they pick up the heart

problems if there was any? I am trying to figure a couple things out

so any responses will help greatly.

Thanks Nadine mother of Austin 1mo. charger and 2yrs

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group 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 web site at http://www.chargesyndrome.org

8th International

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

chargesyndrome.org or by calling 1-.

[Guest guest]

We didn't know anything until was born (after a great labor) and she

turned purple due to the choanal atresia. After she was intubated she looked

great. In the NICU they checked her out and found the heart defects and other

CHARGE related things. She was two weeks early.

Lori Myers

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04!, and Emma (4).

Dallas, Texas

Have a ? to all members

I was wondering if the charge syndrome was a surprise when your child

was born or was it know before delivery? Did they pick up the heart

problems if there was any? I am trying to figure a couple things out

so any responses will help greatly.

Thanks Nadine mother of Austin 1mo. charger and 2yrs

[Guest guest]

Nadine-

CHARGE was a surprise when Aubrie was born. We had no clue even after

several ultrasounds. These were " regular " ultrasounds - nothing special as

far as technology. I was not high risk. In one of the last ultrasounds

before she was born, there was some excess amniotic fluid, but not enough to

be very concerned. Now we know it was because she wasn't swallowing well.

I had several ultrasounds because I was concerned about this pregnancy.

Things just didn't feel right to me. But there was never any thing of

concern found.

Michele W

mom to Aubrie 8 yrs CHaRgE and 8 yrs

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

nkatsimmons

Sent: Sunday, October 29, 2006 9:14 AM

To: CHARGE

Subject: Have a ? to all members

I was wondering if the charge syndrome was a surprise when your child

was born or was it know before delivery? Did they pick up the heart

problems if there was any? I am trying to figure a couple things out

so any responses will help greatly.

Thanks Nadine mother of Austin 1mo. charger and 2yrs

[Guest guest]

I also had too much amniotic fluid while pregnant with .....at a

routine ultrasound with at around 20 weeks, my regular clinic said he

looked wonderful and healthy, tho they couldn't tell what sex the baby was, so I

went to a local college here, a few weeks later, and they were doing

ultrasounds for free, and they are actually the ones who were able to see one of

kidneys had cysts all over it. I had a specialized ultrasound and

they

did measurements and checked him all over and said that the left kidney

wasn't functioning, but he was growing and looked good. I did get the

steroids

to mature his lungs at 32 weeks, they thought he could come anytime, but he

didn't! and I had a scheduled c-section at 39 weeks, where he was born

weighing a whopping 9lbs. 7oz. He was a big boy but still had trouble

breathing and

eating, a few days after was born a geneticist came to talk to me

and told us he had Charge syndrome. he had a PDA, swallowing difficulties, and

ended up needing a trach at 2 months old.

is now a little over 3 years old and doing wonderfully, going to

school everyday and playing with his sister for hours on end!

Hollie, mom to (charge) and Brenna 4

[Guest guest]

When I was pregnant they saw a hole in her heart and fluid on her

brain durning a level 2 ultrasound. and then later they noticed she

only had one kidney. SO we didnt know she had CHARGE but we knew

something was wrong. It was very scarey. They told us she wouldnt live

to full term and here she is 18 months old and doing well.

Crystal mom to (10), (3) and Eva (18 month old CHARGEr)

wife to Dan in Illinois

>

> I was wondering if the charge syndrome was a surprise when your

child

> was born or was it know before delivery? Did they pick up the heart

> problems if there was any? I am trying to figure a couple things

out

> so any responses will help greatly.

>

> Thanks Nadine mother of Austin 1mo. charger and 2yrs

>

[Guest guest]

i think mum knew all along coz she had the fluid to but they ne er knew wat

it was

>

> Nadine-

>

> CHARGE was a surprise when Aubrie was born. We had no clue even after

> several ultrasounds. These were " regular " ultrasounds - nothing special as

> far as technology. I was not high risk. In one of the last ultrasounds

> before she was born, there was some excess amniotic fluid, but not enough

> to

> be very concerned. Now we know it was because she wasn't swallowing well.

> I had several ultrasounds because I was concerned about this pregnancy.

> Things just didn't feel right to me. But there was never any thing of

> concern found.

>

> Michele W

> mom to Aubrie 8 yrs CHaRgE and 8 yrs

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> nkatsimmons

> Sent: Sunday, October 29, 2006 9:14 AM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: Have a ? to all members

>

> I was wondering if the charge syndrome was a surprise when your child

> was born or was it know before delivery? Did they pick up the heart

> problems if there was any? I am trying to figure a couple things out

> so any responses will help greatly.

>

> Thanks Nadine mother of Austin 1mo. charger and 2yrs

>

>

[Guest guest]

was born light years before what is now known about CHARGE and

prenatal diagnosis in general. However, like Michele, I. too, had excess

amniotic fluid. Oddly, no dr mentioned this to me. I knew that I was

getting bigger earlier than I had with E.; later, my sister-in-law, in peds,

told me that excess fluid can signal a problem. wasn't as active in

utero as E. had been, but there were no true signs of problems. I've

always wondered if drs other than my sister-in-law suspected something

given the excess fluid. Martha

[Guest guest]

i have often wondered if my baby brother who died at birth had charge

i never saw him (he was born and died the night before my fourth birthday)

but they said he would have been deaf and blind, he wouldn't have been able

to eat 'normally', he had major heart, kidney, and lung problems and he

didn't have nasal passages... i think about it a lot... not an unhealthy

amount... but it was twenty threeish years ago... CHARGE was even

less-well-known then... and he didn't survive... so... and incidently mom's

uterus ruptured because he wasn't swallowing.

anyway.. i sorta suspect it.

Cole

>

> was born light years before what is now known about CHARGE and

> prenatal diagnosis in general. However, like Michele, I. too, had excess

> amniotic fluid. Oddly, no dr mentioned this to me. I knew that I was

> getting bigger earlier than I had with E.; later, my sister-in-law, in

> peds,

> told me that excess fluid can signal a problem. wasn't as active in

> utero as E. had been, but there were no true signs of problems. I've

> always wondered if drs other than my sister-in-law suspected something

> given the excess fluid. Martha

>

>

[Guest guest]

Is that part of what has drawn you to us?? Isn't it something the impact a

sibling has had on you - even one who didn't live. The way life works is

mysterious and amazing, isn't it?

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Angelcole

Sent: Sunday, October 29, 2006 11:44 PM

To: CHARGE

Subject: Re: Have a ? to all members

i have often wondered if my baby brother who died at birth had charge

i never saw him (he was born and died the night before my fourth birthday)

but they said he would have been deaf and blind, he wouldn't have been able

to eat 'normally', he had major heart, kidney, and lung problems and he

didn't have nasal passages... i think about it a lot... not an unhealthy

amount... but it was twenty threeish years ago... CHARGE was even

less-well-known then... and he didn't survive... so... and incidently mom's

uterus ruptured because he wasn't swallowing.

anyway.. i sorta suspect it.

Cole

[Guest guest]

Friends,

22 years ago, when Jeff was born we had no idea either. I was

polyhydramnios because Jeff's TEF ended in a blind pouch also. I had a regular

ultrasound because the doctor thought he heard two heart beats, thinking maybe

twins. But it turned out to be an echo because of all the amniotic fluid.

Everything on the untrasound looked good. Jeff was born at 36 weeks gestation,

weighing 6 lbs. 13 oz, after my water broke. Good thing . . . I was 5'2 " tall

and two weeks earlier I measured 4' around. I looked like a blimp. Had I gone

any longer, I'm sure I would have popped! Ü

When Jeff was born, his cry sounded like he had something in his throat.

When they went to suction him, the cathether wouldn't go down and that is the

first they knew that something was wrong. He spent 10 months, 4 days in the

hospital before ever coming home, and had 11 surgeries during that time. At 11

months he was diagnosed with CHARGE.

I'm glad they know so much more about CHARGE now, and children are getting

diagnosed sooner. Much thanks goes to the Foundation, for being instrumental in

spreading CHARGE Awareness.

Smiles from,

Baker - Mom to Jeff (22 yr. old CHARGEr), Steve 23, recently married and

attending BYU/Provo, and others married with children of their own, providing me

with 5 handsome and active grandsons (plus one on the way), and two beautiful

curly haired granddaughters - one a Special Angel with Cornelia deLange Syndrome

(CdLS).

http://www.caringbridge.org/me/jeffbaker

[Guest guest]

We found out at the 18-week ultrasound that had a cleft lip. They also

picked up on a heart defect, but they said all along that she a VSD and it

turned out to be a PDA. They also got carried away with looking for other

abnormalities every time I'd have an ultrasound after that, but none of what

they found turned out to be CHARGE-related--or even true! I had a full-term

pregnancy (actually 10 days past due and had to be induced), and was a

total squirmer the whole time I was pregnant. We got the CHARGE diagnosis at

three months of age, once they discovered 's hearing loss and colobomas.

, mom to (4)

http://kauffmanlak.blogspot.com/

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

Check out the New Yahoo! Mail - Fire up a more powerful email and get things

done faster.

[Guest guest]

Same as Michele, the doc said there was some excess amniotic fliud,

nothing to be concerned about. Amita was induced at 40 wks. Of

course the diagnosis came at 20 days once the swallowing and the

malrotation, Asd , colobomas hearing etc. were discovered. And life

has never been the same again. Journey's been tough and still is but

I think I have matured as a person in ways that I doubt would have

happened if all had gone smoothly.

Deepta

Mom to charger Amita (8 on Nov 3rd)

>

> Nadine-

>

> CHARGE was a surprise when Aubrie was born. We had no clue even

after

> several ultrasounds. These were " regular " ultrasounds - nothing

special as

> far as technology. I was not high risk. In one of the last

ultrasounds

> before she was born, there was some excess amniotic fluid, but not

enough to

> be very concerned. Now we know it was because she wasn't

swallowing well.

> I had several ultrasounds because I was concerned about this

pregnancy.

> Things just didn't feel right to me. But there was never any

thing of

> concern found.

>

>

>

> Michele W

> mom to Aubrie 8 yrs CHaRgE and 8 yrs

>

>

>

> _____

>

> From: CHARGE [mailto:CHARGE ] On

Behalf Of

> nkatsimmons

> Sent: Sunday, October 29, 2006 9:14 AM

> To: CHARGE

> Subject: Have a ? to all members

>

>

>

> I was wondering if the charge syndrome was a surprise when your

child

> was born or was it know before delivery? Did they pick up the

heart

> problems if there was any? I am trying to figure a couple things

out

> so any responses will help greatly.

>

> Thanks Nadine mother of Austin 1mo. charger and 2yrs

>

>

>

>

>

>

[Guest guest]

i do sometimes think that's part of what makes me stay here even tho i have

no contact now with the child who originally brought me here... although

that may change if i end up doing my internship at his school lol

anyway... yes, i do think that's part of what keeps me here... that and the

fact that all of your children have become such an integral part of my life!

someday i do hope to meet all of you!

Cole

>

> Is that part of what has drawn you to us?? Isn't it something the impact

> a

> sibling has had on you - even one who didn't live. The way life works is

> mysterious and amazing, isn't it?

>

> Michele W

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> Angelcole

> Sent: Sunday, October 29, 2006 11:44 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: Re: Have a ? to all members

>

> i have often wondered if my baby brother who died at birth had charge

> i never saw him (he was born and died the night before my fourth birthday)

> but they said he would have been deaf and blind, he wouldn't have been

> able

> to eat 'normally', he had major heart, kidney, and lung problems and he

> didn't have nasal passages... i think about it a lot... not an unhealthy

> amount... but it was twenty threeish years ago... CHARGE was even

> less-well-known then... and he didn't survive... so... and incidently

> mom's

> uterus ruptured because he wasn't swallowing.

> anyway.. i sorta suspect it.

> Cole

>

>

[Guest guest]

Hi Nadine,

Like most of the other parents, we had no idea anything was wrong.

Felix was full term and right up until the end we thought he was 100%

healthy. We learned of his issues after birth. Felix's heart problems

are small and could not be picked up on ultrasound. His biggest issue

was the TEF-EA (esophagus was not connected) and as far as I know they

don't look for that on the ultrasound.

Hope this helps,

>

> I was wondering if the charge syndrome was a surprise when your

child

> was born or was it know before delivery? Did they pick up the heart

> problems if there was any? I am trying to figure a couple things

out

> so any responses will help greatly.

>

> Thanks Nadine mother of Austin 1mo. charger and 2yrs

>

[Guest guest]

Nadine,

I knew nothing of Vinny's health problems. I had 2

ultrasounds, one at 7 or 8 weeks and then the usual

one at 19-21 or so weeks. The only thing they

mentioned was that Vinny's stomach was slightly larger

than normal, but nothing to be alarmed about. He had

5 heart defects... my friend who is an OB said they

would have/should have picked up on those if they were

looking. They weren't looking. It was an uneventful

pregnancy.

Vinny received his CHARGE diagnosis by 2 weeks of age.

He had choanal atresia, cardiac issues, malformed

ears which were all noticed right away.

Best of luck in finding peace with all of this.

ina, mom to Luca (3) & Vinny (16 months w/ cHARgE)

--- nkatsimmons wrote:

> I was wondering if the charge syndrome was a

> surprise when your child

> was born or was it know before delivery? Did they

> pick up the heart

> problems if there was any? I am trying to figure a

> couple things out

> so any responses will help greatly.

>

> Thanks Nadine mother of Austin 1mo. charger and

> 2yrs

>

>

>

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