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Name: April
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Name: Andrea Jackson | Date: Nov 12th, 2007 11:25 PM
Hi April,

I have a 3 year old son called lewis who has down syndrome, this is my story; at the age of 21 I discovered I was pregnant with my first child and very happy as was lewis' father, I decided against not having any tests as I thought at my age that nothing could go wrong and as far as I knew only older mothers were at risk. It wasn't until my first scan that things started to appear lewis' had caphalic markers on his heart and appeared small for the dates of my pregnancy. Over the next couple of months I had several more scans and they noticed that lewis' femur bone was very small in comparrison to the rest of his measurements and that other bone measurements were not in line with my pregnancy dates. It wasn't until i was in my 24th week of pregnancy when i was having a detailed scan of lewis's heart that the consultant began to piece together all the findings and then told me that he thought that there was a chance that my child had down's syndrome. I was given a 1 in 20 chance it doesnt sound alot but when you take into account that a woman of my age the chances of having a child with down's syndrome was 1 in about 1700. I was devistated and scared I was told that I had 24 hours to decide if i wanted the amnio which i new could take two weeks for the results to come back so i said to my consultant i will be 26 weeks gone it will be to late! my consultant then said to me if it was what i wanted then i could have a termination. A termination at 26 weeks was out of the question i knew that if i went into premature labour at 26 weeks then he could survive anyway. i didnt know what to do so in the end i decided that i wouldn't make the decison instead leave it to nature i have always believed whats meant to be will be. So i carried on with my pregancy putting it to the back of my mind and hope for the best, i ended up being admitted to hispital with pre-eclamsia and had lewis 5 weeks early, lewis wasnt breathing when he was born and was rushed to special care, i remember saying to his dad did he look alright i dont know why i said this. 2 hours later we were taken to the special care unit and taken into his room where some doctors were waiting for us and they just came out with it we beleive your child has down syndrome, just like that 2 days later it was confirmed by a blood test. i loved lewis from the first time i saw him and knew from that minute that i had made the best decision leaving it to nature, lewis was very poorly to start of with but cam eout strong, he is now three years old and has taught me so much that no book could teach me and i class him as my very special gift!

I hope this has been helpful and good luck with your research paper, if you need any more infor please feel free to get in touch

Andrea 

Name: Cyndi Ward | Date: Nov 21st, 2007 4:48 AM
My 13 month old daughter Elaine was born with down syndrome and we found out after she was born. 

Name: teri | Date: Dec 26th, 2007 8:23 PM
with downsi have 10 month old girl 

Name: teri | Date: Dec 26th, 2007 8:27 PM
i have ten month girl with downs she is perfect 

Name: Maria | Date: Dec 28th, 2007 12:13 AM
I found out that my 9 month old daugher had Down Syndrome through an Amnio. I had a Quad Screen and I had a 1 in 10 chance that Madison would be born with Down Syndrome. I was scheduled for a Level 2 Ultrasound shortly thereafter and Madison did not show any Genetic Markers for Down Syndorme. My husband and I decided to go through with an Amino to confirm or deny the Quad Screen Results. When we were told both my husband and I were upset, however, that was very short lived. Our concern was if our daugher would have any other circumstances b/c of the Down Syndrome diagnosis. Madison was born on my husbands birthday and she is a wonderful, beautiful and happy 9 month old. 

Name: Carla | Date: Jan 25th, 2008 2:06 AM
Hi April

I am a 40 year old single mum, my daughter is a T21 baby, I knew at 12 weeks, she had the heart, the bowel and the neck as soft markers, this was by ultrasound. At 19 weeks the heart was now an avsd, the neck was at the upper limit and the bowel had fixed itself. At 20 weeks I had the amnio and Thaya grabbed the needle! She went full term and was delivered by Ceasar. She is now 10 months old and has had open heart surgery. She has a wonderful personality and lives, laughs and loves like everyone else in the world. 


Name: constance | Date: Feb 2nd, 2008 6:35 AM
Hello, I am a mother of three. My youngest child, Olivia has Down's. The doctor's told me three hours after her birth. Blood test followed to confirm. When I first found out about Olivia I was heart broken. I prayed and cried almost every night. People tried to be supportive (“ God pick the right one to handle it", You are strong enough to handle this", Don't worry everything going to turn out fine” etc.) But they could never know how it feels. I felt alone and depressed for months and even today sometime when I get " me time" I still cry. My tears are more for me than Olivia. She is wonderful! I thank God for her every day. I couldn’t imagine life without her. I hope this helped you, feel free to contact me if you need any additional information. [email protected] 

Name: annmarie | Date: Feb 3rd, 2008 11:40 AM
we didnt have a amnio found out at birth. i was only 22 when i had my son 

Name: mmom | Date: Mar 7th, 2008 2:07 AM
April- I found out when I was 29 weeks pregnant. The blood tests performed early in my pregnancy showed that I had a 1 in 2400 chance of the baby having down syndrome. I went for a regular checkup at 29 weeks and my stomach was measuring large for that stage. I was sent for an ultrasound to find out why and found that I had excess amniotic fluid due to intestinal blockage in my daughter. this birth defect is very common in ds and I had an amnio done to find out. That is when I found that my daughter has ds ...hope this helps! 

Name: Jessica | Date: Mar 14th, 2008 3:36 PM
I am a Music Therapy student at Florida State University. We have the newest research, which is always improving, in music therapy.
First off, I want everyone here to be aware that Music Therapy can do wonders for those with developmental disabilities. Please look into it, or contact me for more information.

Also, I am trying to find the parent of a child with a disability to interview for research. It will only take about 10-15 minutes, and I can do it online. It will also be beneficial to all since it is research, and will only improve education and therapy. Please find me on AIM, my screename is YJs littleDoll
or you can e-mail me at [email protected]

I have been posting everywhere and have not found any volunteers. Thanks 

Name: mmargo | Date: Mar 15th, 2008 12:47 AM
Hi all,
My daughter is the best thing that ever happened. My 16 year old daughter is everything to me. When other parents are worried about what there kids will achieve my child id learning how to respect others, deal with controversy and over come adversity. I hope that in someway I can teach my daughter these skills. I wonder how many parent thinkabout these skills as there children grow.

My daughter is wonderful, kind, dramatic, evil, and the most innocent being on he planet. I only hope that I can teach her the basic sense of selfishness that she will need to survive.

maryellen 

Name: julie mcguire | Date: Mar 16th, 2008 7:37 PM
Iam a mother of a daughter aged nearly two with downsyndrome i found out after she was born 

Name: CRYSTAL GALLEGO | Date: Mar 20th, 2008 6:23 PM
My daughter was born with downs. I found out the day she was born. She kept sticking out her tounge and i asked if that was normal. They told me she had downs. I cried every night and she stayed in the hospital for a week. I couldn't even hold her because seeing all those machines just hurt so bad. She is perfect. She is 6 months old and has low platlets, but other than that she is in perfect health. I was 25 yrs old when she was born. Me and my husband have a 4 year old son and he loves her so much. We want to have another one but we are scared that this child will be born with downs. 

Name: BRITTANY | Date: Mar 28th, 2008 4:43 PM
i would like to ask come questions about down syndrome 

Name: shona warner, australia | Date: Mar 29th, 2008 2:44 AM
i have a four month old baby girl named ashlee, my husband and i didn't find out that she had down syndrome until the birth, i did opt to have the blood test and ultrasound that tests for down syndrome during the pregnancy even though i am only twenty seven but nothing showed up abnormal.
it was a huge shock but we are blessed to have her in our lives.
if you have any more questions on the subject i am happy to help.
my email address is [email protected] 

Name: Mike Marquez | Date: Mar 31st, 2008 4:59 AM
I have a son age 9 months, found out at birth. We are pro-life so we did not do any amnio's.
He name is Greg and he will be having heart surgery on March31 2008 to repair his VSD. I am 46 aND my wife is 38,Greg is our 4 th child , We have 3 girls all healthy age 5,3,2 and we are expecting our 5th child.
Our email is [email protected] if you need to ask any more questions 

Name: tory palmer | Date: Apr 10th, 2008 3:19 AM
hello. My daughter is 5 months old and has one of many diagnoisis of DS. AT 16 weeks i had the triple screen done. and my dr. called me on my cell phone on my way to work and told me i had a 1 in 25 chance. Went for a level II ultrasound a week later and they said she had to signs of DS. Then when she was born we were told she probably had it. and waited a week for the screen 

Name: Jill | Date: Apr 24th, 2008 7:41 PM
Iam an expected mom to be.an older mom to be.I found out through amneo that he was going to be born with down syndrome. 

Name: karin | Date: Jun 18th, 2008 1:20 PM
hello, what do you now about musictherapie about downsyndrom? helps music? 

Name: lisasing | Date: Jun 19th, 2008 9:43 AM
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Name: patrice | Date: Jun 25th, 2008 12:09 AM
Maybe you have already done your paper. I just found this site. However, I have had 2 downs children of my own, and one downs grand-daughter. My first child is "normal", a daughter. My second daughter had downs., I was 21 years old. I knew she looked different, but couldnt put my finger on it. The hospital where I had her, put her in a empty nursery with the lights out. She turned purple, they told me she was cold. When I got her to my own doctor, he comfirmed what I suspected. Not only did she have downs, but also a severe heart defect. I only had her 6 months. the following year, I had a son. A beautiful boy. I had an attempt at amnio, and they couldnt get fluid.I would not have aborted anyway, so I chose not to persue another try at a later date. He is 27 years old now. I was the one educating the nurses in ob, on nipples and the care and feeding of downs infants. I am a translocational carrier for downs. We found out when my son was 5 months old, that I had the defect. and so did my daughter. We were always very open about her chances and the choice of a father that could deal with it. Hers didnt, hes not in the picture. 5 years ago, she was pregnant , at the age of 25 and had the amnio. It was positive for down s. she cried, because we had hoped that her first pregnancy would be the best shot at a normal birth.We also found out from the amnio that the baby was a girl. I considered, after life with her father, that a penis was a more severe defect. Our fantastic littleone had no heart problem, which, was all we were concerned with. She is a beautiful happy healthy girl. going into regular kintergarden this year. her ob tried several time s to get her to end the pregnancy. It just isnt right for us. She will be an only child, unless , at some point , they can adopt another downs child already here. , good luck with your paper. and let parents know it is ok to cry for the child they thought they were going to get, but get ready to laugh you ass of , because these guys are incredible! downs, does not in any way mean stupid, my son is a computer wizard. and is able to care for himself at home, by himself for periods of time. Oh how things are changing for them. 

Name: carol | Date: Jun 30th, 2008 12:26 PM
hello 

Name: cherry Girl | Date: Jun 30th, 2008 8:37 PM
April,
I had an ultrasound done at 13 weeks. They could not find the nasal bone and said that was a sign of DS my hubby and I choose not to have the amino done for fear of having a ms anyrate we did a blood test and it said our chances or having a ds baby is 1-578.I feel the baby is going to be healthy he has not one other sign of ds everything else that they look at to see if they think the baby has ds is perfect on our baby what do you think? I am now almost 31 weeks and just can't wait to see if he is healthy. 

Name: martin harris | Date: Jul 4th, 2008 3:19 PM
Hi everyone can i tell you about our new site www.specialfriendsonline.com .This is a unique site for people with learning disabilities and their parent/carers.you will instantly make friends and find inspirational stories.I run a charity for people with Downs Syndrome in U.K and my best friend Greg is in the heroes section,won over 280 medals and just become a main stream gymnastic coach.I would love to hear your stories and hope you will message me.There is a very small cost but this is to pay the moderators and all the safety measures.Hey maybe some of you would like one of the paid moderators job,,work from home! Please spread the word..come and join us,see you soon..Martin www.specialfriendsonline.com 

Name: youlover | Date: Jul 9th, 2008 8:04 AM
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Name: Gale H. | Date: Jul 13th, 2008 11:07 PM
Our daughter Jessica will be five in October. Because of my age at the time of my pregnancy, our doctor encouraged me to have a blood test that prescreens for spinal bifida, ds, and one other. My odds for ds came back 1 in 2. He than strongly encouraged me to have an amnio done at 22 weeks gestation. My husband and I decided to have this test done (despite risks to our baby). Knowing in advance that our child was a girl and that she did have trisomy 21 gave us a sense of control that empowered and allowed us to prepare for this wonderful child. I think I had one really bad day in July of that year where I woke up crying and went to bed crying. That seemed like long enough to induldge myself in pity. We read every thing we could, went to many websites, talked with other parents. When Jessica arrived on the 25th of October, we hit the ground running and never looked back. We have been blessed with the understanding ( probably because we are older parents) that every moment with your child is a moment you never get back. All the horrors you read about are so scary, but surely no one child with ds has all of the problems you read about. Jessica did have to have open heart surgery to repair the AV canal and that was scary. But she has always had very good muscle tone, curious and motivated. Loves books and could turn a book correctly and turn pages correctly at 15 months. Of course we have read to her since she was 4 weeks old. I remember the first night we brought her home, I was amazed at how much she was like my other two children. Duh, I guess I was expecting a big DS to be written across her forehead. We have just finished our first season of Wiener League T-ball and realized that she is younger in both appearance and behavior than other 3 and 4 year olds. This was a bit of an eye opener. That is okay, she will get where she needs to be at her own pace. The jouney of parenting any child is daunting and when you start out with something like ds it can be even tougher. Support from others, acceptance from family, a spouse who loves your child as much as you do, and most importantly the absolute belief that something bigger than yourself is at work here, will make it all work just fine for your child (ds or no ds). 

Name: jan | Date: Aug 9th, 2008 2:43 AM
there are less babies born to women in their forties and more in twenties and thirties and most down syndrome babies are born to women in their twenties and they still do not know what causes it just attribute it to age increasing while percentage are not justified by number of births. 

Name: jan | Date: Aug 9th, 2008 2:43 AM
does anyone know where there would be group home for adults with down syndrome in ga 

Name: Jan | Date: Aug 9th, 2008 2:45 AM
I feel prenatal testing should be a women's choice at any age. They base tests on age due to percentages, but in fact less babies are born to older women than younger. Things have got to change. 

Name: Jan | Date: Aug 9th, 2008 2:48 AM
It is up to you if you want to keep the baby, they do not have accurate tests that early in pregnancy. But to wait for a more definite test will mean a fully developed fetus if you decide to abort. It is up you and your spouse -- it isn't an easy road, I know from experience. 

Name: Jan | Date: Aug 9th, 2008 2:50 AM
Do not know how old you are, but I do believe things are getting better for down syndrome children. I had one twenty years ago., 

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