Special Needs

When did find out your baby had Down Syndrome ?

What did your prenatal tests determine ?

Was your Quad Positive?

Were there DS Markers on the Ultra Sound? If so , Which ones ?

Thank you

Re: When did find out your baby had Down Syndrome ?

  • All of our prenatal tests were normal. 

    Our first ultrasound showed a spot on the heart which can be a soft marker for DS so we went for a level two ultra sound.  It did not show any additional markers. The geneticist actually said she would not recommend any additional testing because the initial spot was a shadow.   

    We found out two minutes after delivery when the nurse was cleaning DD up.  She blurted out...whoa. this baby has down syndrome.  Worst possible way to find out.  It was devistating for us, but just because of the circumstances surrounding the delivery not because of the diagnosis. 

  • image jellybelly321:

    We found out two minutes after delivery when the nurse was cleaning DD up.  She blurted out...whoa. this baby has down syndrome.  Worst possible way to find out.  It was devistating for us, but just because of the circumstances surrounding the delivery not because of the diagnosis. 

    Wow. I'm so sorry that's the way you were told. We found out after birth too. I was supposed to get my tubes tied along with the c-section and the doctor pulled down the blue sheet and said (about five minutes after we were told of the diagnosis) "Given this information, do you still want your tubes tied?"

    I understand why they had to ask, but the whole thing was just awful. Delivery room fell silent, like everyone was in mourning or something.

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • I found out at our NT scan that we had high odds.  The level of fluid behind his neck was thicker than the norm.  Since NTs are not conclusive and we knew we would not terminate, we opted to have an amnio.  We had the results in 3 days.  If we had not had the NT scan, our MFM said that he would have not suspected anything as our son didn't have any markers.

    I feel for all of the ladies who found out at birth.  I had a lot of time to process the information before meeting my son, and I will always be grateful for that. 

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  • At 10 weeks, the nuchal fold measurement was high.  I had CVS at 11 weeks and Ellie was determined to have Down syndrome at 11.5 weeks... in fact, a year ago next week.  She is currently five months old.  I'm glad we knew, because she has some health problems that were picked up on the level 2 and fetal echo we had due to her diagnosis and we were able to prepare for her hospitalization at birth.  She's a little rock star, though!

    Edit - 10 weeks preggo!

    Megan

    Megan Mommy to Ellie 3/11 (Down syndrome, AVSD, duodenal atresia) www.little-miss-stubborn.blogspot.com
  • We found out 5 days after he was born (weird, I know).  We had not done any prenatal testing except 20 wk ultrasound which had no markers.  When I was about 33 wks I ended up in the ER with crazy symptoms that ended up going away unexplained, but we found that ds was missing a bundle of nerves in his brain.  This caused us to have a level 2 ultrasound the next day, but were told that even though they saw a bright spot on his heart they were 98% sure we didn't have to 'worry' about Downs.

    When he was born we had a genetic test run because of the brain thing, and the genetic counsolor called me while I was in the NICU (alone) with him.  She stated they got the results back, and I said "great! what are they?", expecting a yes or no to chromosomal issues.  She just blurted out "he has Down Syndrome".  Yup.  My husband was an hour away at his first day back to work, and none of my son's doctors or nurses had been informed even.  BUT...

    He is the apple of our eye.  He is 13 months old and I am now 8 weeks pregnant again.  We will be getting the NT screen just to see if we will need extra care with this pregnancy, but that is it.

  • we found out after he was born as well, and they werent completely sure. The Dr came in the morning after he was born to tell me and MH wasnt even there with me. It was awful, worst moment of my life.

    MH is Korean so Caleb had his eye shape. But his tone was low. It wasnt until we got the bloodwork back from the genetic testing about a week later, did we know for sure.

     

  • 1. NT scan showed a nuchal fold of 6.6.

    2. Yes

    3. The NF was high on the NT scan. At the level 2 before my amnio it was in the normal range and her limbs measured 1 day behind, so nothing other than that initial ultrasound.

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  • Well, we decided not to do The quad screen because we were considered low risk and it wouldn't have made a difference in following through with the pregnancy. I had a typical pregnancy and my ultrasound was normal. Which later iwas told 50% of babies with Down Syndrome have normal ultrasounds. I   gave birth during Hurricaine Irene. And had a beautiful baby girl on Saturday, August 27th and nothing was mentioned about Down Syndrome. The next day she was jaundiced and her bilirubin was still high on Monday ( our discharge day) she was admitted to the pediatric unit and thats where a nurse and doctor mentioned it to us. What a blow because we thought her only issue was the jaundice. Well they did the karotype and it came back positive. It baffled me because I couldn't understand why we were finding out so late. She doesn't have any heart defects and we were told because she her physical features were slight thats a possible reason why it was missed. I hope this helps.
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