I seemed to have seen recently where you could not find a dr. to help with Zoe's heart. I am the mom of a little girl named, Annabel, full T18 who turned 3 in March. I don't know if you have heard of Dr. Carey before. He is from Utah. His email is john.carey@hsc.utah.edu his phone number is 801-585-6600.He is very involved with the SOFT organization (T18).He will surely get you to a very pro thinking cardiologist. Also Dr. don Shaffer(maybe Schaffer) is a pediatrician in Houston, Texas. Annabel was in much need of a surgery for her kidneys and her urolgist wouldn't do it due to her lethal diagnosis. I research this problem with other trisomy parents and his name was given to me within one day. This wonderful man saw us the next morning and called Annabel's urolgist and told him to do the surgery on Annabel because she was alive and that is what mattered. I don't know his number but if you call information in Houston you should get the number. Have you ever thought of attending the SOFT conference (DEnver, July 23,2008)? You can attend alone or with child and you get to see 4 specialist in clinic, free and I know there is a cardiologist that will be there. You could bring records. I went last year for the first time and came away with a world of information. Dr. Carey is very involved and you will have many opportunities to talk and be part of his talks. There is a words of information from parents there going through the same struggles for help and there are many success stories. If you need more answers you can email at suzyque92@hotmail.com or Annabel's blog is annabelgrace.blogspot.com Thank you and praying for Zoe, Cathy & Annabel
I seemed to have seen recently where you could not find a dr. to help with Zoe's heart. I am the mom of a little girl named, Annabel, full T18 who turned 3 in March. I don't know if you have heard of Dr. Carey before. He is from Utah. His email is john.carey@hsc.utah.edu his phone number is 801-585-6600.He is very involved with the SOFT organization (T18).He will surely get you to a very pro thinking cardiologist. Also Dr. don Shaffer(maybe Schaffer) is a pediatrician in Houston, Texas. Annabel was in much need of a surgery for her kidneys and her urolgist wouldn't do it due to her lethal diagnosis. I research this problem with other trisomy parents and his name was given to me within one day. This wonderful man saw us the next morning and called Annabel's urolgist and told him to do the surgery on Annabel because she was alive and that is what mattered. I don't know his number but if you call information in Houston you should get the number. Have you ever thought of attending the SOFT conference (DEnver, July 23,2008)? You can attend alone or with child and you get to see 4 specialist in clinic, free and I know there is a cardiologist that will be there. You could bring records. I went last year for the first time and came away with a world of information. Dr. Carey is very involved and you will have many opportunities to talk and be part of his talks. There is a words of information from parents there going through the same struggles for help and there are many success stories. If you need more answers you can email at
ReplyDeletesuzyque92@hotmail.com or Annabel's blog is
annabelgrace.blogspot.com
Thank you and praying for Zoe,
Cathy & Annabel