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Harmony blood test results


Forum: September 2013 Playroom

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  #1  
April 2nd, 2013, 02:09 PM
mommy2lilmen's Avatar Mega Super Mommy
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Got the call today about my Harmony test and I wish I could doubt the test but for some reason I CANT. I was told 99% CHANCE DOWNS for sure for my baby. I did not do the amnio yet but the genetics dr offered termination first, then offered amnio or wait it out. I don't know what to do. I'm very angry right now as I knew something was wrong, probably why I have yet to tell many people, kids included that Im pregnant. I am afraid for the amnio. I don't know if I want to risk the possibility of loosing my baby over downs syndrome. They are lovely functioning people just like us, I just dont know how the rest of my family will take it. Will I get shunned or more. I am not in shock to the results, I was prepared for it. My husband was so nice about it, he let me sleep in the morning and woke me to the call. Not what I expected to wake up to, but that's ok. I guess it was meant to be that he stay awake after work to take the call and be by my side to hear the results. So now what. I don't know. I am booking the amnio but I may or may not go to it. The genetics dr said that's ok to. That's all that's all I wanted to share you all with
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  #2  
April 2nd, 2013, 02:37 PM
H_Hplus1's Avatar Supermom to 6
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First of all a big cyber ((hug)) to you!! I t sounds like termination isn't an option for you with your worry of risking the baby over the amnio. Dh sounds like he's being supportive which is so important to have with a special needs baby. The best thing to do is arm yourself with information about what to expect or could expect. The range could be mild or severe. A friend of mine didn't know her son was DS until he was nearly 8 months. The characteristics were so slight. Try not to worry about what others may think or may act. Your baby has been given a great mom with all those brothers to help you take care of him/her.

Wish I could say the right things to make you feel better. I suck at stuff like this. Just know I am thinking of you.
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  #3  
April 2nd, 2013, 02:45 PM
Alpha_allie1010's Avatar Platinum Supermommy
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So sorry to hear that it was positive...to be honest...if your family shuns you for having a special need child then are they really the kind of people you want in your life anyway? Anyone who would do that is total scum to me. I agree...do lots of research and maybe find a local group of moms with DS children.
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  #4  
April 2nd, 2013, 02:53 PM
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I'm sorry you woke up to the news, but I think you're right. People with Downs are lovely people, too. Often more so than "regularly abled" people.

I don't think you should worry about what your family will think. They are your family and should be supportive and welcoming of your new family member regardless.

This is a decision for you and your husband to make. I wouldn't consider anyone else's opinion at all, to be honest.

On that vein, DH and I decided not to do any of the chromosomal testing. If our baby has developmental delays or chromosomal abnormalities, it may make our lives more difficult. But it's still our child and we will love him or her regardless.
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  #5  
April 2nd, 2013, 03:08 PM
L-SBB's Avatar Bébé Cowgirl
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what a difficult way to get the results, just waking up and unprepared for the news (((HUGS))) I like the suggestion to find a support group to help you plan and prepare, I do think knowing this early will be helpful to you ultimately, but you need time to absorb and process everything. Hopefully your family will be supportive to you, it would be so disappointing if they aren't.
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  #6  
April 2nd, 2013, 04:25 PM
Keakie's Avatar Learning to walk in faith
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I'm really sorry for the positive test result, but am glad that your dh has been so kind and supportive. I agree with the other ladies - the decisions you make from here on out, especially those regarding further testing, are entirely up to you and your dh.

This may be an incredibly naive question so I apologize in advance if that's the case, but is there anything more that an amnio will tell you at this point in time? Would an amnio be able to offer you more information regarding the severity of it and offer you a more specific idea of the types of extra needs your baby will have? Or would it just be one more confirmation that the baby does have DS?

If all that an amnio would offer would be further confirmation and you have a lot of concerns about the safety of the amnio, I *personally* wouldn't bother. It sounds like you don't have any doubts that the DS diagnosis is correct, and like you've already got an idea about your next steps as far as proceeding with the pregnancy or choosing to terminate (IIRC from other threads, the latter wasn't something you were interested in). If the amnio is going to stress you out and have you worried about the baby's safety and if it wouldn't really offer you any information you don't already have, I don't really see the value for you.

I absolutely agree with Allison that the kind of family who would shun you for having a special needs child is not the kind of family who deserves to be in your life. While I realize everyone may not make the decision to keep a special needs baby, the fact that it's what YOU want to do and what your dh seems to want to do too is all the matters here. How horrible that they would shun you and their grandchild at a time when you could really use additional love and support.

I think I've mentioned it before, but I have a JM friend whose precious little boy was born with DS back in December. She found out during her genetic testing too. Her little boy is doing wonderfully (not to mention he's stinkin' adorable) and she's a very kind hearted lady. If you were interested in talking to her, let me know and I'll PM you her username. If you aren't quite ready for that, that's entirely okay too.

Sending you lots of love and hugs, mama.
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  #7  
April 2nd, 2013, 04:54 PM
mommy2lilmen's Avatar Mega Super Mommy
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Quote:
Originally Posted by Keakie View Post
I'm really sorry for the positive test result, but am glad that your dh has been so kind and supportive. I agree with the other ladies - the decisions you make from here on out, especially those regarding further testing, are entirely up to you and your dh.

This may be an incredibly naive question so I apologize in advance if that's the case, but is there anything more that an amnio will tell you at this point in time? Would an amnio be able to offer you more information regarding the severity of it and offer you a more specific idea of the types of extra needs your baby will have? Or would it just be one more confirmation that the baby does have DS?

If all that an amnio would offer would be further confirmation and you have a lot of concerns about the safety of the amnio, I *personally* wouldn't bother. It sounds like you don't have any doubts that the DS diagnosis is correct, and like you've already got an idea about your next steps as far as proceeding with the pregnancy or choosing to terminate (IIRC from other threads, the latter wasn't something you were interested in). If the amnio is going to stress you out and have you worried about the baby's safety and if it wouldn't really offer you any information you don't already have, I don't really see the value for you.

I absolutely agree with Allison that the kind of family who would shun you for having a special needs child is not the kind of family who deserves to be in your life. While I realize everyone may not make the decision to keep a special needs baby, the fact that it's what YOU want to do and what your dh seems to want to do too is all the matters here. How horrible that they would shun you and their grandchild at a time when you could really use additional love and support.

I think I've mentioned it before, but I have a JM friend whose precious little boy was born with DS back in December. She found out during her genetic testing too. Her little boy is doing wonderfully (not to mention he's stinkin' adorable) and she's a very kind hearted lady. If you were interested in talking to her, let me know and I'll PM you her username. If you aren't quite ready for that, that's entirely okay too.

Sending you lots of love and hugs, mama.
Because the harmony test was just started befor Christmas here, the genetics dr is not convinced that its accurate because of the 5% false positive rate regardless of getting a 99%. being I have had many babies befor, she feels that an amnio would be best. Myself I only want to know for sure, so I can move on and be happy and love this pregnancy instead of being in limbo, kwim?? I wont terminate because of downs, that's not why I would get the amnio. I am dead scared of the needle going in me and causing fetal death. I just don't know on that. I wouldn't mind your friends username, I could possibly talk to her see what tests she done and what not. I feel bad I spent the $800 to need the amnio anyways. Im not being forced to get it done by any means, They left it up to me now even tho they said they wouldn't befor.
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Mommy to 7 boys and 1 girl!
Sean 16, Justin 13, Kevin 11, Jayson 10, Bryce 4, Seth 3 & Kade 1
4 babies 94,95,99, 08~TL April 2003 & Sept 2013 TR May 2008

~~~~~~~~~~~~~~~~~~~~~~~~~~
Blessed with 1 Autistic and 1 Down Syndrome child
~~~~~~~~~~~~~~~~~~~~~~~~~~
Alyssa Marie Jade
September 1, 2013 @ 11:01pm 6lb 8oz & 18.5in
Emerg C Sec, Down Syndrome blessing, AVSD, Hirschsprungs, G tube
58 day NICU stay, Sept 1- Oct 29 2013





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  #8  
April 2nd, 2013, 05:11 PM
MamaLaurie's Avatar Veteran
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Sending you many I think the ladies here have given some great advice. I don't think I could add anything, but want you to know I am thinking about you.
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  #9  
April 2nd, 2013, 05:34 PM
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I don't have anything to add besides all the amazing advice you have already received from the ladies here. I did want to tell you that I'm thinking about you and I know you and your husband will make the right decision for you and your family, regarding the amnio! You sound like you have a great support system in your husband and all of us here on JM are here for you, no matter what! Sending you lots of hugs, positive thoughts and prayers!!!
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  #10  
April 2nd, 2013, 05:44 PM
Keakie's Avatar Learning to walk in faith
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I'm having trouble PMing you her name. Can you send me one/will it let me reply?
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  #11  
April 2nd, 2013, 06:03 PM
iCathy's Avatar Mega Super Mommy
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I don't have a lot to add but (((hugs))). We are here for you and your beautiful baby!!
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  #12  
April 2nd, 2013, 06:20 PM
TaraJo29's Avatar Mega Super Mommy
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I'm so sorry you got a positive result again.

However, I agree with others who said that anyone who would shun you for having a special needs baby is not worth having around anyway.

What *I* would do, especially considering your worry about losing the baby b/c of the amnio (which is legit since that is a known risk), is not bother with the amnio. I would resign myself to the fact that the baby does have downs. It seems very, very unlikely that he/she doesn't at this point, right? If it turns out the tests were wrong, praise God. But I would count on it at this point and move to the next step... finding a support group to help you deal with any issues you may have after birth, reading some books about downs from the library, and educating yourself on what to expect. That is what I would do. I totally understand the desire to know FOR SURE but you've had 2 different genetic tests and both were positive so I would just try to convince myself that it is what it is so that I could move on emotionally to dealing with the reality.

Definitely see if you can find some local moms of downs children who have been right where you are right now and can tell you what to expect. Maybe your dr. or the hospital where you will give birth can hook you up with names or groups?

*hugs to you*!! So sorry you're going through this stress.
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  #13  
April 2nd, 2013, 06:24 PM
mirdeemrlvs's Avatar Mega Super Mommy
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What incredible advice ^ all those ladies have given you. As another poster said, I am not very good at this kind of thing... some of the reasons you stated are why we don't do any of the testing. When they told me the risks involved with amnio, it was higher than the risk of me having a child with special needs. Personally, I felt I didn't need the additional stress of false positive results of even positive results for that matter. Now that you know... it's going to take time to take it all in. SO happy you have a supportive husband and happy you are not considering terminating. I wouldn't worry about what others might think. You need to consider yours and your husband's feelings that's it. There are families who want to specifically adopt DS babies for anyone who may consider that. Super Duper HUGS to you <3 and prayers being sent your way.
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  #14  
April 2nd, 2013, 07:15 PM
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I didn't thoroughly read the other replies, so I am sorry if I am repeating anything.

First of all, . I am sorry that you didn't get better news and that your family isn't very supportive.

Second, I can't said what I would do for sure, since I haven't been in your shoes before, but I would like to think that I, personally, would probably accept the results of the harmony test as accurate, especially coupled with the NT measurements, and start researching support groups and figuring out how to prepare myself for all that will come along with having a special needs child. Worst case scenario, your baby is born with Down's Syndrome, which you are already prepared for and best case scenario, your baby is born without Down's Syndrome and you find out all of that prep wasn't necessary. IMO, you wouldn't be risking anything unnecessarily for what would likely be the same result, regardless.

Of course, I am not in your shoes so I can't tell you what is best for you and your family. Just know that we are here and support you no matter what you choose.
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  #15  
April 2nd, 2013, 07:30 PM
beckiethedoula's Avatar Mega Super Mommy
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I just want to send you some more love. The other ladies have given you tons of wonderful advice! I would personally skip the amnio if it won't change how you deal with your pregnancy. It wouldn't be worth the risk to me.

I did want to pass along the link to Kelle Hampton's Blog Enjoying the Small Things

She had a daughter with undiagnosed Down's Syndrome a few years ago. Her birth story with Nella is raw and beautiful. Here's the link to that:
Enjoying the Small Things: Nella Cordelia: A Birth Story

Her blog is a beautiful story of her coming to accept Nella and her differences, to becoming an advocate for DS people and their families. She also wrote a beautiful brilliant book called "Bloom".

So much love coming your way for you and your very special little one. <3 <3 <3
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  #16  
April 2nd, 2013, 08:29 PM
Heidijens1's Avatar Super Mommy
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I am sorry you are having to deal with this. I think the other ladies have said everything I could. I too would skip the Amnio if I already had 2 positive test results.
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  #17  
April 2nd, 2013, 11:05 PM
ValyntineG's Avatar Based on a True Story
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I don't have anything to say that someone else hasn't already said, so I'll just ditto Allison and Keaks and offer some big hugs! You know we'll support you no matter what you decide
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  #18  
April 2nd, 2013, 11:45 PM
TayAnd2Angels's Avatar Platinum Supermommy
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So sorry that the test came back positive. You have received some really good advice, so I will just add that I'm thinking of you.
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  #19  
April 3rd, 2013, 07:41 AM
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My heart goes out to you. I got false positives for two different genetic disorders (DS and I think the other was trisomy 18) in my first pregnancy. I remember how scary it was and that awful feeling on being in limbo because you don't know for sure. I declined the amnio, then found out about 2 months after receiving the positive test results that there was an error inputting my information into the computer at the testing lab and my results were perfectly fine afterall.

Whether you choose to get the amnio or any further testing or not, we are all here for you. <3
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  #20  
April 3rd, 2013, 07:54 AM
AmbzAsh's Avatar Little Miss Sunshine
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First of all, sending you lots of love and many many hugs!

Second, I could not agree more with the advice and support that the ladies above have given you. I am so glad that your hubby has been sweet and supportive to you. Beckie beat me to posting that link for Kelle Hampton's blog....it's incredible
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