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Just confirmed T21. Anyone else?

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wannanother Posted: 04-12-2010 7:28 PM

Hello!  I just learned that our baby has T21.  Any others with T21 on here? 

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homeaway replied on 04-14-2010 3:47 AM

Did not want to read and run. My thoughts are with you . If nobody here can help then ask your doctor if they can recommend any sites that will give you more info. Take care.

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Leeloominai replied on 04-14-2010 6:40 AM

Ditto pp.  With DS I had a very high risk of Trisomy 13 (I know it's not the same) and found there are so many support sites for Trisomies, they seem to offer excellent support and information.  Good luck with your journey!

Me: 37 (Sandra)       DH: 33 (works in Brasil)
3 Furbabies   Rufus, Sasha and Jackie
Angel Jan 22 2008 (9w2d)
Angel Apr 23 2008 (9 weeks Probable ectopic with methotrexate)
Baby Boy 5 May 2009 via emergency C-section 39w4d
Baby Girl 18 October 2010 repeat C-section 38w1d

My Chart     

 If you're 30+, TTC#1 after loss(es), come drop by the Triple Threats for some tea & sympathy (over here...)

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wannanother replied on 04-14-2010 7:03 AM

Thank you to the posters.  I am finding that this is very isolating.  Thankfully, I do have a wonderful support system IRL.  I am just walking a different path than many of my friends/family.  I am slowly but surely finding support online.  Thanks!

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chiefmir replied on 04-14-2010 11:04 AM

I"m glad you are finding support online... since T21 is the most common trisomy, I'll bet there are also some more local resources (when you are ready for that ) that maybe your OB could help you find. 

when/if you are interested, i read a very moving blog about a mom who recently gave birth to a daughter with T21 (she didn't know before delivery).  it was an extremely beautiful, heartfelt and honest piece of writing (with some wonderful pictures).  i didn't want to presume that it would be the same experience for you to read it, as a mom who has gotten a recent T21 diagnosis (I found the entry while waiting for my own amnio results due to an elevated T21 risk last month) so i'm not putting in a link... but if/when you are interested, you can find it by googling Down's  Syndrome + Blog + Nella.

hugs to you and your family!

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homeaway replied on 04-15-2010 4:58 AM

We are always here to listen , and i am glad that you are finding the resources you need . Take care of yourself .

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mikesMom replied on 04-25-2010 10:31 AM

Just hugs for you on your new journey.  I don't know anything on line (esp. here) for support, though one of my best friends has a son who has T 21.  He is an amazing little boy! 

I've also heard good things about the book, Expecting Adam, which is the memoir of a woman whose son has Down Syndrome.  

HugHug

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christineslc replied on 05-01-2010 6:48 AM

I know that you can contact the main support group for Down Syndrome.  They have all kinds of support and will even match you with a mentor to help you through all the decisions you have to make.  If you need me to find you the site, let me know.  I have a friend with a daughter who has DS and she is just perfect :)

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wannanother replied on 05-03-2010 7:59 AM

Thank you so much for all the tips.  We learned on Friday that our son has a very large "hole" in his heart.  A complete endocardial cushion defect.  We have been given a very high risk for mid to late loss.  :-(  At this point, they cannot tell if the baby's heart is balanced or if one side is hypoplastic.  I have been warned that if one side is larger than the other, it reduces the chances for surgical repair.  This is a nightmare.  I am devastated.  I am not a terribly religious person, but I find myself praying almost constantly. 

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chiefmir replied on 05-03-2010 9:57 AM

oh no! I am SO sorry to read this news.  You are in my thoughts.  Maybe (if you have the energy to seek this out) there is someone on one of the T21 support boards who has walked this part of the path and could support you.  I know that the T18 support website (www.trisomy18support.org) has message boards for all parts of the pre-and post diagnosis stage... including for families who are dealing with mid/late/peri-natal loss and things related to that.  I'm hoping for the best possible news for you.

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homeaway replied on 05-05-2010 10:41 AM

So sorry  for you and your family. Try to  take each day at a time, which i know is easier said than done and get as much information as you can .  A friend of mine who has a child with disablities once told me that  sometimes you have to just deal with today. Sending you lots of hugs.

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wannanother replied on 05-06-2010 7:59 AM

I am working really hard to take it one day at a time.  Today, I am a ball of nerves.  Tomorrow is my weekly u/s at the MFM and I just get so nervous.  I am really strong until the day before.  Then, I get very scared.  In addition to his heart defect, he was was not showing much growth or much activity last time.  To get him to move, they gave me three lollipops and a coke.  Even then, he was relatively still.  This is so different than my last two viable pregnancies.  Sad

Forgot to say:  Thanks for all the support.  It means a lot!

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homeaway replied on 05-06-2010 11:36 AM

Dont beat yourself up, you are allowed to be scared. Can you take somebody with you to the scan so that you are not on your own? I will check in here tomorrow to see how you are. I am in Europe so not sure what time zone you are on. I will be thinking  of you. Bigs hugs.

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baby4kim replied on 05-06-2010 2:49 PM

Good luck at the ultrasound. Baby may have just been sleeping nicely. Try to have sugar or something before the ultrasound so he's more active at the start at least. I think it's harder to wake them up once you are in the scan.

You're in our thoughts and prayers.

Kim Flowers

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Amelias Mom replied on 06-05-2010 4:31 PM

I came looking to see if anyone was dealing with waiting on amnio results or had recieved the news recently that their baby had been showed to have T21. I am currently waitning on my amnio reulst from this past Thursday after being given a 1:25 chance of carrying a baby with T21. My big anatomy scan is on Wednesday when I should have a better idea even if I don't have my results back since they should be able to see some of the soft-markers for it. One of my biggest fears since hearing the news from my OB was that if the baby does have T21 then would they have a heart defect...I am sorry that your LO has been found to have one. I am thinking of you and hoping your recent u/s went well.

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wannanother replied on 06-11-2010 2:55 PM

My situation did not turn out well.  But, we had a lot going on besides the chromosome abnormality.  Was your nuchal normal?  From what my peri told me, if the nuchal is normal, that is a good sign because even if the baby has a chromosome abnormality, the child may be structurally normal.  My baby developed a cystic hygroma at the time of the nuchal test and so they began looking for structural issues since it is often caused by the structural deformities that go along with a chromosome abnormality.  I hope that makes sense.  GL!

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