Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Hi Candace, Congratulations to you and your family as you prepare for the birth of your new babies. You have come to the right place, by finding this group. I knew (through amnio) that I would have a boy and a girl and that my little girl would have Down Syndrome. I found this out when I was 18 weeks pregnant, so I did what you are doing and tried to gather as much information as I could. It has been nearly 11 years ago, so the books I recommend may have been updated or there are newer ones out, but the book entitled, "Babies With Down Syndrome" by Stray Gunderson and "Medical & Surgical Care for Children with Down Syndrome", Edited by D.C. Van Dyke, M.D. were the two books I probably referred to the most when my twins were babies. Just remember your baby won't have all the concerns. Each child with Down Syndrome is unique in the medical concerns area and in all areas, for that matter. Another source that has been helpful is the NDSS (National Down Syndrome Society), receiving their newsletter and we even had a video sent to us, before Sara was born, that helped us understand what life would be like with Sara. (can be located on the internet). The other thing that was helpful, was meeting another child with Down Syndrome. Our genetic counselor arranged for us to get together with another family in our area who had a 23-month old little girl. I wouoldn't trade this journey with Sara and her twin brother, Gabe (who does not have DS) for anything. Sara is in 3rd grade, now, with aide help and Gabe is in fourth. They know they are twins; however, they have different interests and different gifts. If you have any more specific questions, please just ask. One of us can probably help answer the question. Welcome to our group. Marcia Mom to Sara (DS) and 10 and Lucas 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Hi, I am new here, this is actually my first day on! I am pregnant with twins, and one of them is suspected to have DS. (Haven't had amnio) I have 3 older children as well. I guess my million dollar question is what can I really expect with a child that has DS. How " different " is raising them, compared to my children w/o DS, and how will it, if at all, affect my other children? I have experience with Early Intervention and intergrated preschools, my 4 1/2 year old has ADHD and a pretty severe language impariment (although she is doing better now) and " they " suspect learning disabilities with her as well. I have this overwhelming fear of the " unknown " right now, which in alot of ways you feel no matter what when you are pregnant. Twin A (the one with the issues!) is a boy, and has also been diagnosed with Tetrology of Fallot, so I am fearful of that as well. I am not due until the beginning of May, but I am trying to learn what I can now, not that I know that it will prepare me at all!!! Just the thought of 2 little babies at once seems overwhelming!!! Thanks Candace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Hi Candace, Welcome to the group. You will learn a lot from this fantastic group of people. I have 4 children, Amy 17, Kelsey 14, Davey (DS) almost 5, and Will almost 5. We are in Northern Nevada. We found out that Davey (baby A) had some problems during a routine twin ultrasound. Davey had fluid in his thoracic cavity. They did an amnio (we had opted not to amnio earleir, since it would not have changed anything that we did), for diagnosis reasons. Davey is the most incredible kid. They boys will be five (can you believe it!) next month. He is on thyroid meds, and we just had his fifth set of ear tubes put in. He is talking in 3 word sentences. We do OT and PT, and speech therapy. The twin thing is always a little overwhelming! Two babies are a lot of work. I am glad the boys are older. Take any help you can get when the babies get here! I don't think my husband and I got more than two hours of sleep the first 7 weeks! Enjoy your pregnancy, and I look forward to hearing about your family. > >Reply-To: Multiples-DS >To: Multiples-DS >Subject: new here >Date: Thu, 13 Jan 2005 20:26:54 -0000 > > > > >Hi, >I am new here, this is actually my first day on! I am pregnant with >twins, and one of them is suspected to have DS. (Haven't had amnio) >I have 3 older children as well. I guess my million dollar question >is what can I really expect with a child that has DS. >How " different " is raising them, compared to my children w/o DS, and >how will it, if at all, affect my other children? I have experience >with Early Intervention and intergrated preschools, my 4 1/2 year >old has ADHD and a pretty severe language impariment (although she >is doing better now) and " they " suspect learning disabilities with >her as well. I have this overwhelming fear of the " unknown " right >now, which in alot of ways you feel no matter what when you are >pregnant. Twin A (the one with the issues!) is a boy, and has also >been diagnosed with Tetrology of Fallot, so I am fearful of that as >well. I am not due until the beginning of May, but I am trying to >learn what I can now, not that I know that it will prepare me at >all!!! Just the thought of 2 little babies at once seems >overwhelming!!! >Thanks >Candace > > > > > > > > > >Multiples-DS >http://groups.yahoo.com/group/Multiples-DS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 Hi Candace, I am Deanna. I also had three children when I became pregnant with my twins. I had a bad pregnancy...diagnosed monoamniotic at 13 weeks....the twins shared the same sac giving only a 50% chance of survival due to cord entanglement. Then about 16 weeks, my AFP came back at 1:16 chance for DS. I declined the amnio because I wanted the babies and I did not want the risks. I basically just started doing a lot of research on the net for DS. My twins were identical, so both would have it and to top it off I was going to have to deliver at 32 weeks. At 20 weeks, Jordan developed hydrops and they said he would not live past 23 weeks. My worry about the DS shifted to worry about his life. I had a crash C/S at 29 weeks and delivered micro preemie boys.....and yes they did have DS. was 1 lb 14 oz, 12 in long and Jordan was 2 lb 6 oz and 14 in long. Jordan passed away 2/2/03 at 13 days old. Now, , even being a micro preemie has done pretty well. He has had medical issues....laryngomalacia, mild tracheomalacia, VSD/PFO (closed on their own), inability to swallow, BPD (chronic lung disease), pulmonary hypoplasia, reflux, aspiration, hypotonic muscles (basically low muscle tone). Even with all of these challenges, he has made amazing progress with a determination and will that amazes everyone. He is one tough cookie. He still can't sit without help, can't crawl, can't walk, is on tube feeds because he can't swallow, and on O2 at night for his lung disease. You will find that every child with DS is as varied medically, physically, emotionally as any other child. You just wait and see what their strengths and weaknesses are and go from there. I can tell you that this journey is a blessing, not a curse. My boys have taught me so much about life and how to live and fight for it. is the best baby i have ever been blessed with. His smile lights up the room, when he does something well we clap and he claps too, he is a miracle. I know the challenges you will face will be different than mine, but just take it day by day and ask as much as you want. Just be a mother and an advocate and your rewards will be 1000fold. This little boy will amaze you. Congratulations on your twins and welcome to this group. Deanna mom to Alyssa 11 9 Jarod 4 1/2 (DS) almost 2...7 more days!!!!! ~i~ Jordan (DS) 1/20/03-2/2/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hiya Gayla It me ...mom to ,Dayton and . As most of you know.. I am a carrier also.. 11yr has DS and Dayton 6yr also has DS... we adopted ...2yr who also is a typical trisomy 21 DS. and Dayton are translocation 13. There is no plan for me to have anymore or us to adopt. Again.. glad to see you here.. Quote Link to comment Share on other sites More sharing options...
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