My son was stillborn with Downs Syndrome, can you relate?

Heather - posted on 02/18/2009 ( 6 moms have responded )

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I just found out yesterday that my son, who was stillborn three weeks ago, had Downs Snydrome. I have so many confliting feelings (you can read about them on my blog http://mystolenlight.blogspot.com/) and I was wondering if since 75% of babies with DS die before they're born, there is anyone else who had a stillborn child with Downs and how they handled the news. I think people just expected me to be glad that he died since he was so handicapped, but I'm not. A Logan with Downs Syndrome is better than a dead Logan.

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Nancy - posted on 02/18/2009

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it is strange how perspective changes, isn't it? often people say they dodn't care if their baby is a boy or girl as long as he/she is "healthy" --- but then when you loose a baby, you realize that "healthy" isn't the ultimate objective either -- just let me have a baby I can love and care for -- "healthy" or not -- perfection not necessary, right?? My fourth son was full term and we had no idea anything was wrong -- but something was terribly wrong -- that was a number of years ago now. And I believe with all my heart what someone else already said -- he is in heaven, perfectly healthy now - waiting for his family to join him according to God's perfect timing... he has been spared the pain of this world in many ways -- he is an eternal gift -- and I will meet him in eternity -- that hope kept me going in those initial months of deep grief and pain -- they still do... May God give you His peace and strength at this sad and heart-wrenching time...

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Molly - posted on 03/18/2014

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My sweet baby with Trisomy 21 lived nine days in the NICU. They had to restrain her wrists. As her mother, I should not have let her suffer. I feel grateful to have known her but wish I could have spared her the pain of her too short life.

Carrie - posted on 03/25/2013

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I can relate to your story, my daughter Alexa Louise died also, found out on Valentines Day that her heart stopped beating. when i went in for my 36 week ultrasound for the growth of the baby. I was devastated as you could imagine. went in the next day to the hospital to deliver her, the doctor said that she was dead for about a week. It has been very hard for me and my family. I found out weeks later when they did some tests; that she did have Trisomy 21-Down Syndrome.

I wonder what she would have looked like through the changes of her life, cry often because I lost my child, and didn't get a chance to see her and love her like i do my other two children. I most certianlly understand what you are going though and it is so heart breaking.

Regina - posted on 02/18/2009

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Heather, I had a baby born with Trisomy 21 at 28 weeks due to a pregnancy complication of severe preeclampsia. I was not aware that he had any chromosomal defect or that they had tested for one until he was almost a week old. Many conflicting emotions went through me, but not ONE, was that I wished he wasn't here with me. I had opted out of a quadscreen because I would not abort based on a chromosomal defect. I now have a high risk OB and we have discussed my options if I choose to get pregnant again. I have still opted out with his support for any invasive diagnostic tests (amnio) including the quadscreen(due to its number of false positives). Give yourself time to grieve, that is the easiest advice to give and the hardest to take. Tanner, my son, passed at 29 days old from complications of prematurity. There is not a single day that goes by that I do not think of him. PS - I am not sure that 75% of children with Down's die before they are born. That may be a statistic for all Trisomy's and Trisomy 13 and 18 are totally different then Trisomy 21. The other Trisomy's have a large number of coexisting congenital abnormalities that are immediately life threatning whereas Trisomy 21 does not. I hope this helps, Regina

Heather - posted on 02/18/2009

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Quoting Libby:



I cannot relate, but I still feel Logan was perfect! 






 






When my quadscreen was done it came back that Trina was high risk to have Downs Syndrome.  My doctor didn't think she had it because she didn't show any characteristics in ultrasound, like low ears, and short legs and arms.  But you are absolutely right, a baby with Downs is better than a dead baby.  I remember thinking that it didn't matter if Trina had Downs because I just wanted her to survive b/c I was having sooooo many problems.  We told our doctor we would not do an amnio and cause any additional risk to our baby.  The outcome was insignificant.  It's not like you can change the outcome of Downs.  I don't know for sure if she had Downs or not, we didn't do an autopsy or anything.  Our doctor said she looked normal and so did the placenta, so we opted for not additional testing, but the only way to have been sure would've been more tests.  Now that my tests came back ok, I wonder if it would've put my mind at ease to have tests done on her.  Not so sure.






But I believe you would've felt the same way.  You would've wanted Logan to add joy to your life no matter what he had.  I'm sorry he isn't with you.  But he's in Heaven and he is perfectly healthy!!  And he is waiting for you and watching over you and his sister. 






God bless!





Libby, Logan didn't have physical traits either.  In fact, he had long legs.  The specialist said that preemies and new borns most often do not show physical traits of DS until they are older.  But I agree, the outcome would have been the same which is why we always refused genetic testing.  They did the amnio after they induced labor.  At that point it was for diagnosing since we already knew Logan was dead and there wasn't any additional risks.  I would have taken Logan regardless of his condition.  I've been informed now that my new OB (the high risk one that I'll have from now on) will automatically do testing for DS since our risk is higher and he said it is something they would need to know during the pregnancy.  I'm not sure why, and at this point I don't care.  I'll want to know with the next one so that I can be prepared for his/her arrival should we need to make arrangments to raise a baby with DS.  But I won't be as horrified as I would have been if they'd have told me that Logan had DS a few months ago.  Back when it would have seemed like the end of the world and the worse case scenerio.  Now that I know that his death was the worse case, DS doesn't seem so scary.  What a thought.  Strange what a dead baby will put into perspective.  I'm sorry you don't have the closure of knowing what happened to your little Trina.

Libby - posted on 02/18/2009

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I cannot relate, but I still feel Logan was perfect! 



 



When my quadscreen was done it came back that Trina was high risk to have Downs Syndrome.  My doctor didn't think she had it because she didn't show any characteristics in ultrasound, like low ears, and short legs and arms.  But you are absolutely right, a baby with Downs is better than a dead baby.  I remember thinking that it didn't matter if Trina had Downs because I just wanted her to survive b/c I was having sooooo many problems.  We told our doctor we would not do an amnio and cause any additional risk to our baby.  The outcome was insignificant.  It's not like you can change the outcome of Downs.  I don't know for sure if she had Downs or not, we didn't do an autopsy or anything.  Our doctor said she looked normal and so did the placenta, so we opted for not additional testing, but the only way to have been sure would've been more tests.  Now that my tests came back ok, I wonder if it would've put my mind at ease to have tests done on her.  Not so sure.



But I believe you would've felt the same way.  You would've wanted Logan to add joy to your life no matter what he had.  I'm sorry he isn't with you.  But he's in Heaven and he is perfectly healthy!!  And he is waiting for you and watching over you and his sister. 



God bless!

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