Guest guest Posted April 14, 2007 Report Share Posted April 14, 2007 Dear Brittney, I am sorry to hear of the loss of your sweet miracle son, Brent. You and he went through a lot in his short months with you. What kind of heart issue did he have? I am glad you have joined this list. My heart and prayers are with you. Mom to Kendra, and Camille Hello > > Hi, > My name is . My wife recently gave birth to our first child, > a beautiful baby boy. We quickly went from elation, to fear, to > heartbreak when the doctors told us that there were some complications > with him. We were with him for just a few minutes before they wisked > him off to the nicu. I was allowed to accompany hin there. We wer > later informed that the doctors felt that he showed many of the signs > of CHARGE syndrome. > Since that time we have had it confirmed that he does indeed have the > disorder. Through the testing we have learned that he is completely > blind, is completely deaf, has problems with swallowing, has small > heart issues, and small(but functioning) kidneys. He gets extremely > congested from the secretions that accumulate in the back of his > throat and nose. He has a very small right nare but it is not a > complete choanal atresia. These issues cause him to " DSAT " , that is, > his bloodstream does not carry the proper amount of oxygen that is > required for normal functioning of his organs. > Our little Elijah is our joy and heart but we have no idea what to > expect. He is only 25 days old. We have so many questions and > concerns that we are overwrought. We wonder if there is a good chance > that we will lose him. We wonder what the average lifespan is for a > child with CHARGE. We wonder what kind of life he will have if he is > both blind and deaf. And a multitude of others. We both just need to > hear the truth about what we all can expect. Our doctors continue to > give us the " we just don't know what to expect " kind of answers. > Any thoughts or insights would be very welcomed from anyone. > > Thanks ahead of time, > and > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Brittney, it sounds like Brent was a real fighter and had the typical " spunk " we all hear about with these kids. I remember Kennedy loved to pull out her tubes and be stubborn when she was very young. I'm sorry to hear he didn't make it but it seems like he made a really positive impact in your life. Love from, & Kennedy www.chargesyndrome.info > > well sorry to say he passed away march 16, 2004 he was 15 months old. he > had a long rough journey. his name was brent. his heart stopped. the doctors > all said he was deaf and was blind, but we proved them wrong. his oxygen > level stayed between 50 and 70 when not on oxygen. he always dsat. he had to > have a feeding tube in his intestines because he refluxed every 10 ccs that > went in him. they were going to do a nissin but his heart wasnt strong > enough to keep getting put to sleep. they couldnt operate on his heart > because he wasnt stable enough. we prayed all the time kept going to church > they kept telling me they cant do anything else but we had faith. he would > pull out his ventalator and theyd have to put it back in because he would > code. one night believe it or not we were standing there praying and i saw a > light. they nexyt morning the hospital called and woke me up to tell me he > pulled his tube out and was breathen on his own. a miracle. he got moved to > the picu for a couple of months finally we got to take him home after 8 > months. we had to feed him through the tube go to doctors 3 times a week. we > had 24 hour nursing he went back a couple of times. he did good for the > first couple months then his heart started acting up. then one day out of no > where it stopped. he was my miracle baby. he did everything the doctors said > he would, they dont know everything. just have faith and trust in god. i > know alot of things about charge syndrome and digeorge syndrome. if anyone > has any questions please ask. i love to talk about it....... brittney > > Re: Hello > > > > love him, treasure him and expect great things from him!!!! > > > > our son has amazed us many times!! > > > > mom to Timmy 11 ChARGE, keegan 9 liam 6 wife to pat > > Hello > > > > Hi, > > My name is . My wife recently gave birth to our first child, > > a beautiful baby boy. We quickly went from elation, to fear, to > > heartbreak when the doctors told us that there were some complications > > with him. We were with him for just a few minutes before they wisked > > him off to the nicu. I was allowed to accompany hin there. We wer > > later informed that the doctors felt that he showed many of the signs > > of CHARGE syndrome. > > Since that time we have had it confirmed that he does indeed have the > > disorder. Through the testing we have learned that he is completely > > blind, is completely deaf, has problems with swallowing, has small > > heart issues, and small(but functioning) kidneys. He gets extremely > > congested from the secretions that accumulate in the back of his > > throat and nose. He has a very small right nare but it is not a > > complete choanal atresia. These issues cause him to " DSAT " , that is, > > his bloodstream does not carry the proper amount of oxygen that is > > required for normal functioning of his organs. > > Our little Elijah is our joy and heart but we have no idea what to > > expect. He is only 25 days old. We have so many questions and > > concerns that we are overwrought. We wonder if there is a good chance > > that we will lose him. We wonder what the average lifespan is for a > > child with CHARGE. We wonder what kind of life he will have if he is > > both blind and deaf. And a multitude of others. We both just need to > > hear the truth about what we all can expect. Our doctors continue to > > give us the " we just don't know what to expect " kind of answers. > > Any thoughts or insights would be very welcomed from anyone. > > > > Thanks ahead of time, > > and > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 , Let us know how makes out. Good news for ³crawling man²! pam > > > > > Just want to let everyone know that is going to have his nose surgery > tomorrow. He is a little bit scared and worried if he is going to wake up. > That's a man for you > JD is still doing fine and it looks like he is going into a crawling > position he is very active right now. I have to call tomorrow to see when his > GI > appointment is. > Thanks for your prayers. > > > > &, parents to twins: > Olivia : potty training,walking, running the house, talking, saying no all > the time and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube, > Trach, on CPap w/ O2 at Night, severe to profound hearing loss, dumping > syndrome ) 22 months, Waxahachie, Texas > > ************************************** Get a sneak peak of the all-new AOL at > http://discover.aol.com/memed/aolcom30tour > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 , Let us know how makes out. Good news for ³crawling man²! pam > > > > > Just want to let everyone know that is going to have his nose surgery > tomorrow. He is a little bit scared and worried if he is going to wake up. > That's a man for you > JD is still doing fine and it looks like he is going into a crawling > position he is very active right now. I have to call tomorrow to see when his > GI > appointment is. > Thanks for your prayers. > > > > &, parents to twins: > Olivia : potty training,walking, running the house, talking, saying no all > the time and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube, > Trach, on CPap w/ O2 at Night, severe to profound hearing loss, dumping > syndrome ) 22 months, Waxahachie, Texas > > ************************************** Get a sneak peak of the all-new AOL at > http://discover.aol.com/memed/aolcom30tour > > Quote Link to comment Share on other sites More sharing options...
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