Diagnosis

Down

Syndrome

If you are visiting this site because you have received the news that your baby has Down Syndrome, congratulations are in order. First of all you have a baby (or are going to have a baby). I realize this isn't the baby you expected. (Welcome to Holland) Babies with Down Syndrome are as unique and adorable as every baby that is born. This website's purpose is to inform you of the life realities that a person with Down Syndrome can look forward to today. Undoubtedly you will be told of the medical possibilities. You will be advised by well meaning family members, friends, and medical professionals. Hopefully your Dr. is enlightened about the positive points to parenting a child with Down Syndrome. Unfortunately, much of the time they only present the medical possibilities and fail to mention the great potential that children born with Down Syndrome have and the joy they bring to their families. Any decision is yours. Do not ask opinions of people who are not in your situation. If they do not have a child with Down Syndrome they can not tell you what it is like. I have included stories and photos from parents of children with Down Syndrome. There are links to other sites so you can read more detailed stories and learn more about Down Syndrome. An excellent book that I suggest you read is Babies With Down Syndrome A New Parents Guide edited by Karen Stray-Gundersen. Join the Down Syndrome News Group and ask hundreds of parents any question. Information on how to subscribe and how to contact The National Down Syndrome Society and The National Down Syndrome Congress can be found at: Welcoming New Babies and Down Syndrome Sites. And for the most comprehensive Web Site on Down Syndrome and related topics see the Riverbend Down Syndrome Parent Support Group and HealthLink U.S.A.

To download or print 'Light at the End of the Tunnel' an informative pamphlet designed for parents with a prenatal diagnosis by parents who had prenatal diagnosis' and now have children with Down syndrome click here: http://www.dsaoc.org/

If you are visiting this site because your friend has delivered a baby with Down Syndrome or has a prenatal diagnosis, please see my speech entitled: "What To Say to Parents of a Child With a Diagnosis".

This is an ultrasound picture of Carmen Christi at 20 weeks gestation. And yes, she IS sucking her thumb! Early in my pregnancy some information came back in a blood test that indicated my body was producing some antibodies against my baby's blood. Because of the serious problems this can cause, my OB suggested that we have an amniocentesis done to determine if the antibodies were moving across the placenta and to get some exact blood-type information on the baby. We decided that while they were doing that anyway, they might as well do the genetic tests. We did not, of course, expect to find anything there. We received a call two weeks after the amnio with our news--our baby girl has Down Syndrome. At first, I can only describe our reaction as shock and numbness. We had mentally prepared ourselves to have medical intervention in this pregnancy, but we were not prepared for this. I spent the next morning in tears, as I grieved for the baby I was planning to have. We have a 6 year old 'little lawyer' and a 2 year old 'little engineer', and maybe this was going to be my newborn 'little brain surgeon' or 'little research chemist'. In the span of one phone call, those dreams had gone up in smoke. However, by that afternoon, I came to realize that the baby of my dreams was just that...a dream, and not reality. The reality was that this baby was going to be different, and I was going to have to learn to deal with those differences. We began to do some serious research on Down Syndrome. I headed for the library, my husband headed for the internet, and we were off. What we found was, by and large very encouraging. I learned that Down Syndrome is not the end of the world. I found parents of children with Down Syndrome on the Web who were glowingly proud of their bundles of joy. I read stories about how these children had bestowed countless blessings on their families. I learned that Down Syndrome did not mean a child who could not do anything 'normal'. In fact what struck me was just how 'normal' these kids were...they just did it a little slower than other kids. Finally I spent a lot of time in prayer and in discussions with friends from church. I have learned over the years that God does not make mistakes, or have accidents. He does things on purpose which may not fit in to our own personal agendas, but when looked at in retrospect, are far better than anything our agendas have to offer. It became clear to me that this baby was going to be exactly that, a blessing wrapped in an unexpected package. And the more parents I meet and talk to who have kids with Down Syndrome the more evidence I have to boldly make that statement! One of the people that most helped me put this whole thing in perspective was a dear friend of mine from church who has a daughter with 'CHARGE Syndrome'--the baby essentially had an in-utero brain injury early in pregnancy, and has severe physical and developmental handicaps as a result. A few days after we learned about the diagnosis, this woman invited us over for dinner (this woman homeschools three 'typical' children plus takes care of this severely handicapped child and she was inviting ME for dinner?!) What struck me was how normal her family life was. This baby was a source of joy to her brothers and sisters, as well as her parents. The baby had not destroyed or taken over her family's lives, she drew them closer together. They feel truly blessed to have her with them. Based on my own children's response to the news, I don't see anything different for our family's future. We are also very hopeful that what we have learned about targeted Nutritional Intervention will possibly help us reduce the effects of that extra chromosome. So take heart. This journey may be a little different than the one you had mapped out in your head, but you can plan on enjoying this baby every bit as much as the one who didn't have that extra chromosome. Educate yourself, and prepare for that newest little angel to land in your arms.

Carmen Christi was born on Friday, December 12, 1997! To see her from this side of the womb, click on her name.

Ginger

On July 5, 1996 we gave birth to our little Sadie, 10 minutes after she arrived we were told she had been born with Down Syndrome. My husband I were beyond shocked, what the heck is Down Syndrome all about? Almost seven months have passed and I am still learning all that I can. I have to tell you that never in my life have I been more in love with a person than I am my Sadie (except equally shared with her brother). I love them both more than life. If I were told before Sadie was born that she would have Down Syndrome it would have given us more time to research and prepare everyone for her glorious arrival. Sadie had a small operation, but pulled through with flying colours. She has been perfect ever since. Don't be afraid of Down Syndrome. I'm so proud of my daughter and will do everything in my power to help this world understand there is nothing wrong with being a little different. I would never change my little Sadie. We love her because she is Sadie, a little angel that God has blessed not only her parents with, but everyone who is lucky enough to know her.

Abbe

My Husband and I were in your shoes just a year ago. When I was about four months pregnant, we found out that our baby would have Down Syndrome. I found out over the telephone on a day my husband was out of town on business. I can only imagine what you are feeling. I remember what I felt. I remember leaving my office and heading for a book store to buy some books on Down Syndrome. I paid for them with tears streaming down my face. I didn't want to touch my stomach for days. I felt alienated, even a little repulsed, by the movements of that baby that had filled me with such joy the day before I heard the news. It was a terrible time. My husband and I were mourning so much the perfect little baby we thought we had, the perfect charmed lives that we had always led, in which nothing major ever went wrong. And now we have Peter, who is the cutest, sweetest, most dignified little baby you ever saw. He has a shy smile that lights up the room. He has a huge belly laugh that is most easily elicited by throwing him up in the air, giving him raspberries on the throat or almost anything silly his six year old sister chooses to say to him. Contrary to our worse fears, our lives have not been utterly consumed by the burden of caring for this child. We still both work and enjoy our careers. Our other kids (6 & 3 years old) still get plenty of attention and love and are progressing just fine. Yes, there are some medical issues to deal with. And yes he has extra therapy to help push him along to those developmental milestones that our other kids reached naturally. On the other hand he has been the easiest of all our children to take care of. He slept through the night almost from the day we brought him home from the hospital. He only cries when there is a reason. He is SO SWEET, SO GOOD NATURED. He definitely adds more to our lives than he demands. He is a cute baby with all the joy that having a baby brings.

Stephanie

One day Sam's babysitter was preparing to read him a book when she made an astonishing discovery. Before she could open the book, Sam blurted out the word "up". She looked at the title of the book and saw that one of the words was up. Amazed, she turned to a page where the only thing printed on the page was the word apple. When she asked Sam what it said, he replied, "apple". It turns out that Sam was reading the words in the books that we had read to him dozens of times. The words were simple such as eat and hat, and not so simple like tickle and vacuum. He could identify 26 words in any random order, even if they were handwritten. And for those words he couldn't say, he used signs and gestures to communicate their meaning. This outburst of literacy was quite remarkable, especially given Sam's age at the time--22 months. What's even more remarkable is that Sam is no ordinary toddler. He has Down Syndrome. Sam's achievement is no fluke. Across the country, many other children with Down Syndrome have accomplished as much or more. One girl in Dearborn, Michigan could (by age five) read over 1,000 words in English, and 200 in Spanish and French! This after being diagnosed as someone who was barely educable. Such accomplishments were unheard of only a generation ago. Then, as now, most thought children like Sam were incapable of learning much at all, especially academics. The imagination and daring of a growing number of educators have clearly redefined the conventional wisdom in field. These children have benefited from Infant Stimulation Programs and Early Intervention Programs. To say the least we have been pleasantly surprised by Sam's progress. Before he was born, a geneticist warned us about all the possible problems Sam might have. The possibility never came up that Sam would be a beautiful, healthy. thoroughly delightful child with academic talents and a great eagerness to learn.

Bob

For more on the method Bob used to teach Sam to Read click: Love and Learning

When Noah was ten months old, he was alert, but seemingly content with doing...little. He observed everything around him, but he didn't really take part in much. He got himself around in pretty creative ways, hummed a lot, but other than that was not very vocal at all. One night my husband woke me up and said, "Honey, you have to watch this thing on T.V. there's a mother of a child with Down Syndrome, and I don't think you'd want to miss this, it looks really good!" It was a segment of the program Day One. What we learned from that broadcast came to play a transformational role in the life of our baby. The woman being interviewed was Dixie Lawrence, and she was sharing her discovery of the tremendous value of Targeted Nutritional Intervention (TNI) in the life of her child,Madison. I was so excited that the following morning I set about obtaining for Noah the supplements, including Piracetam. Within 10 days, it had arrived! All the way down to our tiny island in the West Indies! I remember so clearly that day...and Noah's response to the supplements. As I have some background in nutrition, and have always been health conscious, I was also aware that most changes brought on by supplementing the diet with vitamins, minerals and amino acids, etc., are generally the kind of changes that sneak up on you. One day you look back and say, "Wow! I feel so much better than I used to...Must be those vitamins." So I was totally taken by surprise when Noah's response turned out to be the dramatic change that I observed! Within hours of taking his first dose, we saw our little boy begin to blossom. I likened it to a Christmas Tree that got plugged in, all the coloured lights came on and began to twinkle! Everyone who knew him saw the difference. Within hours he was grabbing at the spoon to feed himself, which he'd never done before! He began to babble happily and squeal, the way babies do, but he had not done before. When it was bath time that night, instead of merely lying there, complacently spaced out in his pleasant, wet, gravity-free environment (as he had done in the past) he started to kick his feet and splash and cackle and have fun!!! WOW! I called the whole family in to watch. It was such a treat for us to see him "coming out" of his quiet, little bubble. He had always been a delightfully easy baby..apparently quite happy, quietly observing what took place around him. (I'd been in his face since the day he was born when we discovered he might well have Down Syndrome...getting connected, maintaining connection with him, striking sparks and struggling to keep them lit.) Now Noah is three years old. He has only been sick twice, both times the day after traveling by plane to America. (the colds I attributed to the recycled, dehydrated airplane air and change of climate.) Noah sings, picks out notes on the piano, dances the most beautiful choreographed dances, as well as his own improvised spontaneously joyous dances! He climbs ladders higher than six feet, slides down slides, runs, jumps, (so cute this jumping) feeds himself, knows too well how to run the remote control for the T.V., and can work the Tape/C.D. player, and is learning how to work a computer mouse. He can feed the dogs by himself, and gives peanuts to our parrot who flies free and has a nest of babies in a nearby tree. He helps me sweep and mop the floor, and loves to wipe up the tables and counters. He steps up onto a little stool to wash his hands and brush his teeth, which he insists on doing himself. He just turned three last month, May 12, 1997. Well...I could go on and on! I don't know how he would be doing had we never learned about TNI. But, I certainly know how well he is doing! And we will be forever grateful to Dixie Lawrence and all the wonderful people whose hard work has gone into making these supplements known and available to precious children like our Noah! Because of TNI, not only his life has been changed...but, so has ours!

Clover

For more about Noah, click here!

Corey was born on February 5, 1997, in the wee hours of the morning--and a very quick delivery at that. She was having problems with oxygen saturation the Doctor's told us they suspected Down Syndrome, and a heart defect...I knew they must be wrong! My AFP was normal and no heart defects were noted in any of the 4 ultrasounds that I had...plus, she was a full-term, good sized baby...surely they were wrong! My first thought was that I could handle the heart defect, but not the Down Syndrome...I'm not strong enough to be her parent and do a good job of parenting her...and what about what everyone else would think? Those thoughts didn't last very long...our child would have to eventually live without us in this world, and it was up to us to make her strong and independent. Not long after we brought her home, three different people, who do not know each other told us about targeted Nutritional Intervention and Dixie Tafoya. From the very beginning it made sense to me. If there were no detriments to having a 47th chromosome, then there wouldn't be a Down Syndrome. Because I knew in my heart that I had to do the best thing for my daughter, I started her on Nutrivene-D at 5 weeks old, and added Piracetam at 2.5 months. She has grown over 6 inches and had just a little more than doubled her weight in 8 months. This is a cardiac kid, most kids with heart defects don't grow and gain weight anywhere nearly this quick.She has only had one cold, and she was over it in three days. I know that TNI is making a difference in her. I don't have any Corey that never used the vitamins to compare her to, but I do see how alert she is, that she is comprehending many things that I say, she knows her name, recognizes her reflection in the mirror, is strong, and as her cardiologist puts it 'great grip'. Marrying TNI with the available Infant Stimulation and Early Intervention programs and treating this child with the love and respect anyone one deserves will be her ticket to a happy and long life! We love her dearly. There is so much we don't know about our child's potential, but to believe she has NO potential would be foolish.

Mindy

For an up to date complete list of links to Down Syndrome Nutritionally Related Information Sources click here: Targeted Nutritional Intervention

 A Grandparent's Perspective

Lucy was born on January 8, 1996. We were so excited that our first grandchild had arrived. Even though she was four weeks early, she weighed in at a healthy six and a half pounds. Twenty-four hours later my daughter was told that Lucy may have Down Syndrome. This was a great shock to all of us and we were very upset. However, by the time the blood tests confirmed this to be true we had all come to terms with the news, loved our darling Lucy, and were ready to do all we could to help our daughter and her baby. We were all helped by the wonderful support from the hospital and the local Down Syndrome Association. Lucy is now 19 months old. Apart from colds and a couple of ear infections, she is very healthy. She is getting close to walking, her comprehension is excellent, and she knows and uses quite a few signs. This little girl has added a whole new dimension to our lives and we delight in her every achievement. Being a grandmother is wonderful.

Liz

  Adoption

Little Aidan is one of the luckiest children alive. His mommy and daddy are even luckier. Aidan was born with Down Syndrome and his birth family felt unable to cope with the possible demands that such a child may need. If you have tested positive, please be assured that there are many families who are anxiously awaiting welcoming a special little someone into their hearts. There is so much love and support out there for our children, that you've only to tap into these and be met with open arms.

Diane

We are Byrd and Melanie. We are hoping to be blessed with a baby with Down Syndrome through adoption. If you or someone that you know is pregnant with a baby with Down Syndrome and considering adoption, we would love to talk with you. Adoption is a very loving option, as all people are not able to parent a child with Special needs. Please remember, there is an alternative to termination and there are many families praying for a baby (Special needs or not) to join their families. We would consider it an honor to be considered as an adoptive family for your child.

Byrd & Melanie

To contact Byrd & Melanie just click here.

Timothy was born to Chinese parents one month early on November 17, 1993. He was very ill and needed major abdominal surgery in the first few days of life. At one month old he was also diagnosed with Down Syndrome. Due to financial and family pressures his parents were advised to relinquish their rights to him. The SWD then took the rare step of placing him for overseas adoption with Holt International in Eugene, Oregon. At 15 months old he came to his new "temporary" foster family, us! After a year of waiting for someone else to adopt him we decided to adopt him ourselves. Today, Timothy is a 3 year old, very friendly, out going little boy. He can run, and jump, climb ladders, read family names, count to 5, annoy his siblings, and charm total strangers. He is fit and healthy and has only minor delays in every area except in speech and growth. Without an adoptive family he would have faced a lifetime in an institution for the mentally handicapped and it is doubtful he would be the bright and inquisitive child he is today.

Sue in Hong Kong

For more information about adopting out your unborn baby with Down syndrome, please contact CHASK or call them at 1-800-266-9837

"Abortion"  Thinking of an abortion? Click here.

  Inspiration

My little sister was able to crawl as fast as a rocket. So why was it when she was younger my mother used to tell me that she would be slow? I pondered on the question for years to come. My mother explained to me that my sister, Lisa, would not be able to grasp information as quickly as typical kids her own age. Even now, as a young adult who is heading off to college in the fall, I still encounter trouble recognizing the difference between her and other seventh graders. She has worked very hard to be the young lady she is today. She took all the potential she had and was determined to be the best she could be and fit in with typical kids. Whether it was learning to tie her own shoes or pour her own glass of milk, she wanted to do it herself because she believed that if she worked hard, any goal for her would be obtainable. I can distinctly remember many incidents where I attempted to help Lisa out and she replied that she could do it herself. Today, I look at my sister and smile. She is a very independent person and for all she has accomplished I look up to her. Lisa has taught me to never give up, never settle for second best and to always try my hardest. Lisa also happened to teach me how to work the dishwasher and VCR. A few years ago, I wanted to tape a program for my father. I struggled to figure out how to do it, and then I decided to turn to Lisa for help. She taped the show for me and showed me that day how I should learn to be more independent. I look up to Lisa today with gratification because she has given me so much. Lisa has inspired me to work with special education children. This past summer, I worked as a camp counselor for children with special needs. Lisa has taught me so much about life and how not to take things for granted. I hope by going into education I can expand my knowledge on many subject matters dealing with Lisa and other children with similar needs. I am so proud of Lisa for being the special person she is. Today she no longer crawls as fast as a rocket, she runs as fast as the wind.

Andy

I am Lisa, and I am 13 and 1/2 years old. I live with my mother, father, two brothers, a dog, a cat and a fish. I am finishing the 7th grade and in September, I will start 8th grade. I love Broadway shows and musicals. I saw Grease on Broadway many times, and I watch the video many times a week. I listen to the Grease CD all the time. I also saw The Lion King, and Beauty and the Beast on Broadway recently. When I was younger, I loved the show Annie. I love to sing and to listen to music. I want to be an actress when I get older, and I also want to be a teacher's assistant. I am in swimming and bowling Special Olympics. I received many metals, and I am very proud. I was Bat Mitzvahed on October 18, 1997. I read from the Torah, and led the service in Hebrew and English. My mommy tells me everyone was crying because they were so happy and proud of me. Oh yeah, I forgot to mention that I was born with Down Syndrome. I have two brothers. Howie is 22 and he likes to tease me, but it really is his way of playing with me. He went to Syracuse University and now he works. Andy is 18 and he will be going to college. I will miss him a lot. My dog Cody is a collie. The cat, Casper, was originally Howie's, but now he became the family cat. I love to read and write poetry. I go to sleep away camp every summer. This will be my 4th summer there. I really love camp. My favorite television program is "Sister, Sister". Here is a poem that I wrote to my counselor: Scarlet red of an apple, will bring you sweet, and pink peach will reach, and purple plum will bring you harmony of love, and cherries will bring you black peppermint, light of darkening will glitter clear.

Lisa

Here is the speech my mom wrote for my Bat Mitzvah: On August 14, 1984, our family began a journey on a new path and the destination was an unknown. When Lisa came home with us from the hospital, we had no idea how much our lives would gain. Lisa, I always knew how much you would be able to accomplish, and although it took a lot of hard work for all of us, we did it! We stand here now profoundly grateful for what our unique young women has brought to our lives. Close friends and relatives looked down at Lisa in her crib and kindly made comments like "too bad She'll never do this or that", thinking they were showing sympathy for some great misfortune that had befallen us. Well, we stand here today, At Lisa's Bat Mitzvah, ushering this beautiful young women into our congregation, having seen her accomplish all the "this and that" and so much more. Lisa, you have participated in Special Olympics, receiving swimming awards, you have been away at summer camp for three years now, and have written wonderful letters to us, and you write great poetry. You have surpassed the expectations of so many professionals in your ability to read and understand and to write, and these will be skills you will always have. To almost anyone, Lisa is clearly an accomplished young adult in her own right, but what we would like to do today, is publicly thank her for the less tangible gifts Lisa has given our family, just by being our daughter and sister. She has allowed all of us to mature in our understanding of personal strengths and the power of human diversity. Without realizing it Lisa, your sweetness coupled with your incredible strength of character, has taught us the inherent value of all people. Your strong will may have, at times, caused us aggravation and seemed to get in the way, but in reality, it is one of your most valuable strengths. It is the reason why you have been able to come so far. We are better people because of you, so we thank you for that gift. We wish you a happy future filled with more people who will be special to you and experiences that will enlarge your world as well. We know that you will be an asset to any situation that you encounter. We wish my mother could have had the chance to meet you and to see what a great person you are, but I know Aunt Laura is telling her all about you. Now all our friends and relatives have come from near and far, some as far away as Florida, to come and celebrate with us today, because you are so special and we love you, so now let's party.

Lynda

I want you to know you are not alone. The unbelievable part of all this is how much you will learn about yourself and other people. Because of my son I am more sensitive to other peoples needs. I am less self-centered and achievement driven. The one thing that I can attribute to my son is slowing me down to living for today and thoroughly enjoying each day as it happens. I am continually awestruck by the way people accept him and have yet to experience any true prejudice first hand. I can tell you that we do all the things that we planned before Sean's birth. From two and a half years old to age five he attended Gymnastics class and could flip over the bar better than his "typical" peers. We went to Mommy and Me Classes when he was younger. He goes to Sunday school and has attended both Private Preschools and School District Special Education Preschools. He performed with The Sunshine Generation, a singing and dancing group. He took swimming lessons and progressed as quickly as his typical peers. He has been photographed by Life Magazine and his photo has been in various newspapers nine different times. He is on the cover of three pamphlets and has auditioned for J.C. Penney's and McDonald's T.V. commercials and has done runway modeling. He was in two public service announcements. Not may people enjoy this much recognition in their entire lifetimes. Sean is a huge flirt, no heart is safe in his presence.

Sean is now 12 years old, has played soccer since he was 5, the first two years on a regular AYSO Team, the V.I.P, AYSO League. He has played baseball since he was 6 , regular league basketball, regular league volleyball, bowls in a summer league and just made it to the state Special Olympics Golf Tournament. Sean was in Indian Guides with his father. He is in Boy Scouts now. He has been fully included in regular classes since Kindergarten and is now in the 6th grade. He reads, writes, adds and subtracts, multiplies and does pre-algebra....as a matter of fact he had homework recently that I couldn't help him with...no doctor ever told me he would know more math than me! He is in the school chorus, played the recorder, violin, trumpet and drums. He has been in the school talent show with magic tricks and dog tricks.

Everyone I encounter asks me "Did you know before he was born?" I reply, "No, but he would still be here if I had known." That is easy to say after the fact, after I have fallen in love with my son. Every life has a purpose and we cannot know what the future holds for anyone. The most difficult thing for me was telling everyone who was waiting for my baby to be born that he was not the baby we were expecting. I could handle my own grief and surprise, but I could not deal with comforting them, so I stopped telling people and put an additional note in his birth announcement. I would like to share with you that note and you are welcome to use it, edit it, or ignore it....

There is a video of photos to music of Sean from Kindergarten to 6th grade that you can view at:

http://www.onetruemedia.com/shared?p=7f9c84cef53ffc8fd76a1&skin_id=0