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Name: April
[ Original Post ]
Hello, I am a college student in need of some information. I am doing a research paper and I would like to know if you are a parent of a down syndrome child, and if so, when and how you found out these were the circumstances. It would be nice to know if you found out by amnio, ultra-sound, or after birth. I would really appreciate this.
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Name: Crystal | Date: Jun 19th, 2006 4:24 AM
I am a mother of a down syndrome child and I didn't find out he had downs until after he was born . 

Name: charla | Date: Jun 19th, 2006 9:21 PM
my 18 year old brother has downs and my parents did not find out until he was born . my mom worked for the down syndrome association in cinncinatti, ohio im sure if you need more info on your research there is an association in or around your area. 

Name: Katie | Date: Jun 24th, 2006 3:38 AM
I am the mother of a 3 -month -old baby girl with Down's. Found out when she was 2 weeks old. They were concerned about her upturned eyes at birth, poor muscle tone, small ears and extra neck fat. Drew the blood for testing,and sure enough two weeks later we learned of her extra chomosome. 

Name: Gail | Date: Jun 27th, 2006 7:25 PM
Hello, I have a 16 yr old with Downs....He was a HOME BIRTH (by choice)..we went to the hosp to deliver the placenta.. I had NEVER allowed the docs to intervene with "tests"...it seems they have NO PROBLEM aborting a Downs kid,but call it murder elsewhere. At birth.doc said he tested all right....five months later I found out he had Downs...from A PA! He SAW it, yet the Doc didnt!!!.. As far as the "downs"...It has never been a problem for me...we had fun until this negative behavior began...he is a big kid..I'm small & old (59)..My heart is still breaking from putting him in placement only two months ago....If you need any general info, e-mail me, ok...I'm "[email protected]

Name: samantha foley | Date: Jun 29th, 2006 11:32 AM
Hi im a 20 year old mother of two my youngest son has Down Syndrome i found out that he had downs ofter he was born because my doctor told me i didnt need to have the test because of my age. I wouldnt. ha.ve it any other way i dont think i would have handled it as well any other way 

Name: mum of maia | Date: Jul 17th, 2006 5:06 AM
Hi im Angie 26yr old mother of 19month old Maia my partner and i didnt find out Maia was a downs child untill the minute i laid eyes on her. i knew the moment i saw her that she was a downs baby, but it took the Doctors over an hour to tell me, that was the longest hour of my life. I will always remember the moment my doctor did finally tell me i asked him why it took sooooo bloody long to tell me. We have had very few medial upsets with our daughter, she has a very small hole in her heart and only a few days ago she had grommets put in her ears, She was 12days premture, it was a bretch birth and stay only 18 days in the special care baby unit after her birth. 


Name: mum of maia | Date: Jul 17th, 2006 5:08 AM
if you would like to contact me for any info my email is
[email protected] 

Name: ssoto | Date: Jul 25th, 2006 1:54 AM
I am a mother of a daughter with DS. I was 31 yrs old when I had her. I found out after I had her. No regrets whatsoever! By the way, I did all the prenatal care and the test, they all came back normal. Talk about false negatives! 

Name: SUBROWN | Date: Jul 29th, 2006 6:53 AM
I AM THE GRANDMA TO A DARLING 2.5 YEAR OLD BOY WITH DOWNS. WE DID NOT FIND OUT UNTIL HE WAS BORN THAT HE HAD DOWNS. WE KNEW HE HAD A BAD KIDNEY, AND SEVERAL ULTRASOUNDS HAD BEEN DONE, BUT WE WERE SURPRISED AT HIS BIRTH TO FIND OUT HE ALSO HAD DOWNS. MY DAUGHTER WAS ONLY 16 WHEN SHE HAD HIM. 

Name: lucyandmike | Date: Jul 31st, 2006 6:45 PM
i was 18 years old and was pregnant with my first child, at my 18week scan the nurse told me that there was fluid around my baby's heart and brain, she said she didnt know much about that so she sent me and my partner to leeds general hospital to have a specialist have a look at the scan. afterwards the specialist nurse explained to me that i was in the high risk zone of havin a baby with downs syndrome which meant i had a 1 in 100 chance. she offered me an amnio but i refused. back in scarborough at all my other scan the consultant said that everything was fine and that the fluid around my babys brain and heart were dissapering, so i started to think that everything was going to be alright. i had my baby in january 06 and the doctor took a blood sample from the cord and sent it of to have it tested. the results came back after about 3 days and they were positive. the consultant started explaining about what dwns was but me and my partner had already looked everything up so we were prepared. it was a bit of a shook at first because i am so young but i love my little boy so much and wouldnt change him for anything. lucy walker 

Name: Rachel | Date: Aug 7th, 2006 2:07 AM
April:

I found out that my daughter had Down Syndrome after she was born. I had an ultrasound and the fetus looked entirely normal. I also had another test (not and amnio) and it came out that there were no issues with the fetus. So much for tests. I did not want an amnio because they are so dangerous. 

Name: alibo | Date: Aug 8th, 2006 10:18 PM
hi i am a 22 year old mum of 2 my youngest is a little boy who has down syndrome. which i did not find out till he was 2 weeks old with haveing to take him into hospital the day after we got out with him being poorly. it was then they done blood tests and i found out what was wrong with my son 

Name: sbeth | Date: Aug 26th, 2006 3:51 PM
I am 17 weeks pregnant and just recieved abnormal afp test results at the level 2 u/s they found an echogenic foci on our girls heart. The doctor said that this is a soft marker for downs but that everything else looked fine. What do you think? 

Name: Jen | Date: Jun 22nd, 2007 5:34 AM
My almost 2 year old angel boy has downs. I didn't know till after he was born. I'm glad though. I was 31 when I had him. 

Name: Wendy Broadhead | Date: Jun 25th, 2007 5:53 PM
I am the mother of an almost 4 year old son with Down syndrome. (he is our fourth child) We found out the day after he was born that the doctores suspected he had down syndrome but had to wait another three days for the results to come back possitive. He is the light of our lives and we are very glad he is who he is. 

Name: Brandi | Date: Jul 17th, 2007 2:44 AM
Hello.

I'm a 17 year old girl and i have a 15 year old downsyndrome sister. She is in the care of my mom, and she does not take very good care of her health, learning or appearance, i want to put my sister in a home where she will learn, grow, get proper health and everything away from my mother. Any help? Please send info to [email protected] thank you. 

Name: Renee | Date: Jul 17th, 2007 10:19 PM
Has anyone had an ultra sound where you were told your baby had no nasal bone? What does this mean and is it always accurate? 

Name: audrey | Date: Aug 3rd, 2007 1:13 AM
hello. i have a wonderful 7month old bouncing baby boy w/ down syndrome. we found out @ 20 weeks pregnant via amnio and of course we were shocked. i would have my baby no other way and feel blessed, honored, and proud to be his mommy. he is truly a "little piece of heaven" and i feel so special that God pick me to love and care for him and i will always and forever!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
audrey 

Name: Lisa | Date: Aug 13th, 2007 6:04 AM
I am the proud Mother of three chlidren. My youngest, my son, was born via C section in February this year. He was born with Downs.

All my testing came back during the pregnancy as within normal perimiters. My risk factor was elevated slightly because of my age (I am 41) but my ultrasounds looked completely normal.

Even after delivery it wasn't evident right from the start that something was different about him. After about six hours after delivery, I noticed that he had a very poor suck reflex and was to my thinking cyanotic and having difficulty breathing. It took me until the next morning to convince the nurses that something was wrong and when that did see he was transferred to another hospital with a neo natal unit.

It was there that the diagnosis was made and confirmed that he had Downs.

If you need any further info U can contact me at: [email protected] 

Name: lesley | Date: Aug 16th, 2007 6:58 AM
Yes i am a 23yo mother of a down syndrome child. he is 9 months old and going great we found out 24 hours after birth which was really hard to accept. and now it turns out that i have a very rare and un usual chromosone re-arrangement which he has inherited from me. he is thriving i love him to bits. this is all new to me so if any one would like to contact me at [email protected] i would be greatful 

Name: kelly | Date: Aug 18th, 2007 6:03 AM
My little girl was born with Down Syndrome she has what you they call Trisomy 21 which means she has an extra chromosome in her 21st cell when most people have 2 one from mom and one from dad. I didnt find out till she was born i had the AFP testat 20 weeks and it came back normal. i had told the dr. if it came back bad i wouldnt keep the baby so it was a blessing. She was born with a heart defect called Tetrology of Fallot (malformed pulminary valve and arteri) and a VSD (a hole in her heart). She has mild to moderate hearing loss and wears hearing aids and was also born with hip displasia. It sounds really bad but she is really high fuctioning. She two open heart sugerys one a t 4 day and one at 6 months but its all good now and might need one later in life. We live in California were diabled people and children recieve a lot of services we are very lucky. Kennedy is now 3 and goes to a mainstreamed pre-school and is starting to talk she functions at about a 2 year old age but will fall further behind as her peers will learn faster then her. I was only 28 when i got pregnant with her and had a 1 in 990 chance of haveing a Downs child i also have 2 older girls from a previous marriage that are find. Kennedy has he Downs that was just a fluke accident. Kennedy will do great thinks just on her own time, Downs people are very under estimated and are more capiable then people give them credit for and they just need to learn about it. I think it is great you are doing a report, my daughter did one in high school on Kennedy, she got an A i hope you do too, i hope this helps you out. MOMMY of DOWNS Kelly 

Name: deann pancheri | Date: Aug 21st, 2007 9:17 PM
I had good prenatal care and I was 27 years old. I had all the normal tests done including the alpha fetal protein and level2 and 3 ultrasounds. my son was born 14 years ago and I was told after he was observed in nursery. his features were mild and he was born full term almost 8 pounds. he had no heart, thyroid, intestinal or other health issues that can come with this syndrome. he had good sucking reflex and good muscle tone for down syndrome. he does require glasses, and he has iq of 70 to 78. the only reliable test is an amniocentesis. I am 41 and having my 4th baby. my amniocentesis came back good, and I did have a normal child after matthew. I do not have any regrets and I have and will always be grateful to God for making him a part of our lives. my girls are better people as a result of the patience and love he has taught us all. good luck on your paper. I am typing on my pda. sorry so sloppy. 

Name: Jenny | Date: Sep 26th, 2007 8:56 PM
I am 29 years old, and my son, Sammy, just turned 7 weeks old. He was born with Down Syndrome; I knew that there was that possibility while I was pregnant, because of an abnormal AFP test. I declined the amnio, because of the risks, and the fact that I would not have aborted him anyway. I had a 3D ultrasound when I was 5 months pregnant, but everything looked normal. When he was born, I knew from the moment that I saw him that he has Down Syndrome. He is the sweetest little boy in the world, and we love him dearly. 

Name: tiffany | Date: Oct 4th, 2007 12:10 AM
I am a 27 year old mother with two kids and one on the way. I was told by baby may not have a nasel bone. i am scared. What does this mean? 

Name: dannielle | Date: Oct 4th, 2007 10:05 PM
Pay attention to your language, I have a DAUGHTER wtih Down syndrome...not a down syndrome baby!!!!!! 

Name: becca | Date: Oct 7th, 2007 5:29 AM
i have a sun with down i found out when i had him 

Name: louise | Date: Oct 7th, 2007 12:04 PM
i am a 24 year old mum of one and i am 24 weeks prenent with my second child. when i went for my 20 week scan my child had extra fluid on her brain, the same day we were seen by a consultant and had an amnio. i was not given much time to decide if i wanted the test, maybe 2 mins. 2 days later it came back she had downs. i was shocked and upset . i had decliend the triple test because i didn't think i would be at risk, i am 24 and no history of downs in my family. i am now looking foward to the birth of my baby but at the same time worried what the future may hold, but i suppose thats the same with any child. 

Name: Gerri Cremer | Date: Oct 10th, 2007 11:28 PM
I found out my son had down syndrome when he was 24 hours old -it was suspected, the chromosome test was rushed and we got those tests three days later. that was back in 1994. 

Name: Tasha | Date: Oct 19th, 2007 8:12 PM
I had an amnio done which stated my son would have down syndrome, but the other tests that have been done doesnt show any signs how could this be? 

Name: Ramani | Date: Nov 10th, 2007 6:52 PM
hi i am a mother of an 8 years old daughter who has down syndrome and i wondered if i could speak to one of you about how you feel and cope with you child
Please email me at [email protected] 

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 

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