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Forum: Pregnancy Loss

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  #1  
May 4th, 2009, 08:09 PM
Ryleeroo's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Akron, Ohio
Posts: 4,001
I hope this isnt too personal to ask, but I saw on another reply that you had a loss caused by Trisomy 18. You said you were freaking out because your baby is at higher risk, Did you get prenatal testing or are you just at further risk because you have already a child dianosed with it?

We are currently trying to conceive after our loss (Feb 2009) and Im scared...very scared!! And i personally dont know anyone else that has been through this.
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Thank you Ashypoo for my wonderful signature! (and Kiliki and Bam for also making me one which I will change next week!)
Rylee Madison 12-7-2001
Our Trisomy 18 baby boy 2/10/2009 @20.1 weeks
McKenna Claire 3-12-2010
Angel in Heaven 3/16/2011- 12.3 weeks
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  #2  
May 6th, 2009, 03:15 PM
Mega Super Mommy
Join Date: May 2007
Location: Upstate SC
Posts: 4,443
I'm sorry I just saw this today. I was told when after I lost Caitlyn in 2003 that my risk would be 1:250, not a big deal less than 1%. When I had the second trimester screening with Nick it showed an increase risk of Downs, we did nothing as it wasn't that high. With Jon I refused all testing, he was fine. So this time around the Dr decided it was in my BEST intrest to do the screening, it came back 1:36 with was raised to 1:72 since nothing has been seen on U/S. We have decided not to do the Amnio because of the risk of loss and now since I have been bleeding there's no way I will have it done.
Your risk does increase when you have had it happen my normal risk would be 1:1400, 1:250 since I had one with T18, but it's higher now due to the screening.. As everyone knows these screenings can be false positive. Now they do have the NT scan that is now done that can tell you if you have an increased risk of having one with T13,T18, and T21 they measure the baby. Ours was perfect the NT was 1.64 they panic if it's over 3.
All I can tell you is that it is scary, wondering if your baby is going to live or die, whether it has T18 or not. Most people don't even think I worry but I still have days where it scares the H*ll out of me, I know they baby isn't showing anything but in the back of my mind I think "what if".
I can't tell you everything will be fine if you get pregnant again but I can tell you having the boys showed me it was one of those things that happen with our genes. Losing Caitlyn was the second hardest loss but having Nick helped heal some of the hurt.

(((HUGS)))


I wanted to add that during everything I have had several people(including moms who have had Chromosone losses) that lightning doesn't strike the same person twice. When you are told the risk for having another child with T18, that isn't much comfort but it's true.
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Last edited by ftnjn; May 6th, 2009 at 05:32 PM. Reason: To add other things
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  #3  
May 7th, 2009, 09:28 AM
Ryleeroo's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Akron, Ohio
Posts: 4,001
We actually scheduled for the nuchal screening at 12 weeks or whatever (really because I wanted an extra ultrasound- not because we were at higher risk or because we thought something was wrong) and when we got it they told us the baby was measuring one week to small and to come back next week... We didnt!

When I had the prenatal testing my Trisomy 18 risk was 1:10 ( ) i remember getting the call and my stomach sunk. Praying it was one of those false positives. After hours upon hours of crying and researching... I then realized that Trisomy 18 is practically one of the worst things that could be diagnosed to an unborn baby. And then I felt stupid for never even hearing of trisomy 18 before. I am telling you...... No one should ever have to go though it, the emotional pain is unbelivable.

When I had my daughter in 2001, it was a breeze! My doctor stated that this happend because of a fluke and I am maybe 1% chance higher of having it with further pregnancies. My DF worried that it was him because I already had a healthy previous daughter. He asked tons of questions and the answers freaked him out. I guess thats why I asked. We deperatly want a baby but are sooooooo scared. It gives me hope to see people like you that have went on to have healthy pregnancies afterwards. Thank you!!
__________________
Thank you Ashypoo for my wonderful signature! (and Kiliki and Bam for also making me one which I will change next week!)
Rylee Madison 12-7-2001
Our Trisomy 18 baby boy 2/10/2009 @20.1 weeks
McKenna Claire 3-12-2010
Angel in Heaven 3/16/2011- 12.3 weeks
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  #4  
May 8th, 2009, 06:30 PM
Mega Super Mommy
Join Date: May 2007
Location: Upstate SC
Posts: 4,443
I have heard of so many things that can happen to children and babies, it does scare me but I had to put everything in the back of my mind(not easy) and TTC. It's so hard, to try to forget all the bad things when you have experienced them, but the moment I found out Nick was healthy I cried, for joy.
I can't describe how this affect this pregnancy. Because I was diagnosed with a RARE heart condition(peri-partum cardiomyopathy) after Nick was born, I promised the cardiologist this was my last pregnancy, he told me once I made it past 16 wks this was it. I recovered 6 months after I went into Heart fialure, had Jonathan with no problems, no problems so far this time. However the more pregnancies you go through your heart has the potiential of losing the elasticity.
So I have had to focus on the good and forget the bad, eventhough they are moments I am terrified of losing this sweet baby. I am also terrified of finding out the sex because I have this fear that the powers that be don't want me having a daughter(long story).

There is a procedure you can have done if you have IVF the cost is like $2000 where they check for T18. I knew a lady that had it done to make sure her future child didn't have the same genetic problem that caused her 2 year old to pass away. Genetics & IVF Institute
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