Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Hi , I am 48 years old and have CHARGE. I have no idea what some of these medical conditions are. I have bilateral colobomas, hearing loss in one ear, swallowing difficulties, pretty sure I had the nasal atrisia but wasn't diagnosed, small genetalia, and some other problems. I have lived a great and happy life. Kay She who laughs.... LASTS 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-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Excellent! Thanks for sharing. Kim > 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 > HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A> > <A > HREF= " http://hits4pay.com/members/index.cgi?Evbeals " >http://hits4pay.com/membe > rs/index.cgi?Evbeals</A> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 - My name is Jessie and I have a 2 1/2 year old son named . was diagnosed with CHARGE when he was about 9 days old. He spent his first 4 months in Children's Hospital and underwent a total of 6 different surgeries before the age of 1. When the doctors diagnosed Drew with CHARGE, they also told me that he would be mentally retarded - but he's not. He is developmentally delayed (partly due to his frequent hospitalizations) but even the psychologist from the Early-On program said that she truly believes that Drew is much more intelligent that he can show forth due to his physical limitations at this time. No one, not even the doctors, can make a decision like this for you. I have to tell you though, that Drew has continued to surprise his doctors time and again. He's been thru a few serious illnesses that they didn't think he would pull out of, but he has. These kids become such little fighters! I'm not telling you that road ahead will be an easy one, because it's definitely been very challenging for us, but it has been even more so rewarding. I will pray for you and your family and trust that God will give you a peace and understanding beyond what you could even ask or think. > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Liz, Thanks for the update. I know how the surgeries go in the early years. My son Mark has had about 24 total I think. He is 19 now. It is quite a challenge. Quote Link to comment Share on other sites More sharing options...
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