Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 I have been wondering about something. Does anyone know why CHARGE is such a " new " syndrome? It was in the late 70's that babies were born with this? Why? Is it that it was not studied until then, or were there no babies with CHARGE before that time? It just seems strange to me. And this is the reason there are not many adults with CHARGE? Does anyone know statistics, whether the number of CHARGE babies being born is increasing? Just curious, Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 They didnt have a name for it before the 80s and the reason there arnt many of us CHARGErs older then me... most died very young. Chantelle -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 And no its not really increasing (the rate of charge kids being born) so much as awearness and knowing about the CHARGE dx. More CHARGErs are surviving as well. Also more mild end kiddos are being found too. Some adults didnt even get the dx till a couple years ago. Chantelle -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 oh my i didnt know anyone died from CHARGE. > > They didnt have a name for it before the 80s and the reason there arnt many > of us CHARGErs older then me... most died very young. > > > Chantelle > > > > > -- > My spelling's kinda wobbly. It's good spelling but the letters wobble and > end up in the wrong places. - Winnie the Pooh > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Liz- I think Chantelle's exactly right. Before the 70s and 80s, babies born with severe heart defects, cleft palates, and feeding issues did not survive. Those that did were not diagnosed. With modern technical advances, babies born with CHARGE are having a better and better survival rate -- and we're seeing achievement of developmental milestones earlier too with advances in early intervention services. Michele W Aubrie's mom 8 yrs _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Chantelle McLaren Sent: Monday, September 11, 2006 12:36 PM To: CHARGE Subject: Re: CHARGE They didnt have a name for it before the 80s and the reason there arnt many of us CHARGErs older then me... most died very young. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 my g-ma had a baby that died shortly after birth--she couldn't seem to breathe--she always wondered if maybe it was charge related after I had tim. of course this was in the late 30's early 40's so who knows--they just didn't have the med ical expertise they do now--especially a home birth in the middle of kansas. Re: CHARGE And no its not really increasing (the rate of charge kids being born) so much as awearness and knowing about the CHARGE dx. More CHARGErs are surviving as well. Also more mild end kiddos are being found too. Some adults didnt even get the dx till a couple years ago. Chantelle -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 I am not sure either. But I was born with Bilateral Choanal Atresia in 1973. I also had some hearing loss and a few minor things. Im okay now but now my son has the Charge Syndrome. , mom to Olivia and JD twins will be 1 year old on Wednesday. CHARGE I have been wondering about something. Does anyone know why CHARGE is such a " new " syndrome? It was in the late 70's that babies were born with this? Why? Is it that it was not studied until then, or were there no babies with CHARGE before that time? It just seems strange to me. And this is the reason there are not many adults with CHARGE? Does anyone know statistics, whether the number of CHARGE babies being born is increasing? Just curious, Liz ________________________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 I was also the 501th case the survived with the Choanal Atresia in 1973 CHARGE I have been wondering about something. Does anyone know why CHARGE is such a " new " syndrome? It was in the late 70's that babies were born with this? Why? Is it that it was not studied until then, or were there no babies with CHARGE before that time? It just seems strange to me. And this is the reason there are not many adults with CHARGE? Does anyone know statistics, whether the number of CHARGE babies being born is increasing? Just curious, Liz ________________________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Thank you That is very interesting. It seems there are many Chargers all over the world, and yet most people have not heard of this very complex syndrome until their own baby is born with it. Most diseases go back hundreds of years, and this seems to be a " new " thing, but I guess it just was not recognized until recently. Liz Chantelle, did you have heart surgery? -- Re: CHARGE And no its not really increasing (the rate of charge kids being born) so much as awearness and knowing about the CHARGE dx. More CHARGErs are surviving as well. Also more mild end kiddos are being found too. Some adults didnt even get the dx till a couple years ago. Chantelle -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 even 20 yeras ago there would have been alot more CHARGE deaths.....Medica technology has increased ALOT > > I am not sure either. But I was born with Bilateral Choanal Atresia in > 1973. I also had some hearing loss and a few minor things. Im okay now but > now my son has the Charge Syndrome. > > , mom to Olivia and JD twins will be 1 year old on Wednesday. > > > > > CHARGE > > I have been wondering about something. Does anyone know why CHARGE is > such a " new " syndrome? It was in the late 70's that babies were born > with this? Why? Is it that it was not studied until then, or were there > no babies with CHARGE before that time? It just seems strange to me. > And this is the reason there are not many adults with CHARGE? Does > anyone know statistics, whether the number of CHARGE babies being born > is increasing? > > Just curious, > Liz > > __________________________________________________________ > Check out the new AOL. Most comprehensive set of free safety and security > tools, free access to millions of high-quality videos from across the web, > free AOL Mail and more. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 and will keep improving i wouldnt of been able to have the gall bladder out key hole 20 years ago that wasnt around > > even 20 yeras ago there would have been alot more CHARGE > deaths.....Medica > technology has increased ALOT > > > On 9/12/06, erin32573@... <erin32573%40aol.com> <erin32573@...<erin32573%40aol.com>> > wrote: > > > > I am not sure either. But I was born with Bilateral Choanal Atresia in > > 1973. I also had some hearing loss and a few minor things. Im okay now > but > > now my son has the Charge Syndrome. > > > > , mom to Olivia and JD twins will be 1 year old on Wednesday. > > > > > > > > > > CHARGE > > > > I have been wondering about something. Does anyone know why CHARGE is > > such a " new " syndrome? It was in the late 70's that babies were born > > with this? Why? Is it that it was not studied until then, or were there > > no babies with CHARGE before that time? It just seems strange to me. > > And this is the reason there are not many adults with CHARGE? Does > > anyone know statistics, whether the number of CHARGE babies being born > > is increasing? > > > > Just curious, > > Liz > > > > __________________________________________________________ > > Check out the new AOL. Most comprehensive set of free safety and > security > > tools, free access to millions of high-quality videos from across the > web, > > free AOL Mail and more. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Ellen thats amazing for supper, keep it up!! hugs Les xxx > lisa is right we will start when we r ready you know im a charger it took me > 21 hears to get where i am now and im still tube fed LOL last night for > everyones info i ate five pieces cheese vegimite three picesed mango and a > cherrie now whod of thought a few years ago id be doing that LOL there > ishope for us all i know i have also got colabomas cleft lip palte huge > reflux issues and growth problems many other hormonal stuff what other stuff > has emma got my mai issues now r my reflux hearing and hormones where r you > from im from aus hugs ellen > > > > > > HI , > > Nice to 'meet' you and Emma. I wonder if life could ever be so simple > > for us > > that she just may not have enough of an apetite for the bottle if she is > > tube fed? > > Then there is the possibility of reflux or silent reflux creating an > > aversion to bottle > > drinking. I'm assuming as she's being followed for this that breathing is > > not interfering. > > How much does she rely on her mouth to breath? > > Was she taking a bottle previously, then stopped? Were her lungs staying > > clear? > > Any increased secretions, drooling or spit ups after bottle feeds? Does > > she > > prefer > > sitting up a bit to drink? > > Does she like her binky? Is there anything with the shape or muscles of > > her > > mouth or face that might be contributing? > > Are the doctors pleased with her weight? > > Is that enough questions? LOL-laughing out loud. > > There are lots of Mom's with babies on the list who can comment better. My > > > > daughter's > > a little older than bottle feeds. ;-) > > > > Glad you've joined us, > > in Ma. mom to , 21 yrs old. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Welcome and Emma We have a fourth daughter with charge Amelie aged 22 months, her feeding reflux and lungs have been major for her, with 14 month hospitalised, i would like to say we are over the worst but I am saving that statement for next summer, and would like this winter over soon (UK)!! Feeding like everyone will tell you can be difficult and as long as you are getting the calories in by hook or crook (bottle or tube) thats all that matters, amelie has never been fed orally as she aspirates and has yet to pass a videofluroscopy, but like i said It no longer worries me as long as she is thriving with weight gain. good luck and ask away on this listserv there will be someone for every question as i have found and you will never be alone, Lesley Mum to 4 girlies and super wife and student madwife!! (midwife) xx > Hello, > > My name is and my 12 week old daughter Emma has just been > positively diagnosised with CHARGE Syndrome. I'm not sure how the chat > thing works so please bear with me until I get used to this. I was > wondering if anyone has had trouble getting their child to take a bottle. > Emma takes one but only takes a half of ounce to one ounce every four hours. > If you have any tricks can you please let me know. I look forward to > talking to everyone. > > (mother of Emma) > > > Moser > msmollybear@... > Why Wait? Move to EarthLink. > > Quote Link to comment Share on other sites More sharing options...
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