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Devestated, confused and scared to death...

andreachristine81andreachristine81 member
in High-Risk Pregnancy
Hi ladies... I posted on here a week ago when I got a positive screen for Soina Bifida. The good news is that at my anatomy scan for Spina Bifida did not show any indications that my precious little one has Spina Bifida. HOWEVER, there are several other issues that threw me off completely. On the less concerning end, he is measuring small and only falls in the 15 percentile... He has "bright bowels" as well. And on the most upsetting and concerning side, structurally his heart is not right. Yesterday the specialist thought that it was AVSD... I was sent this morning for an echocardiogram and as it turns out he does not have AVSD. However, the left chamber of his heart is measuring small and that is concerning to the pediatric cardiologist as well as to myself. There is a 10 percent chance that it could "catch up" to the right side... There is a 20 percent chance that this heart defect is an indicator of a serious chromosomal issue and there is an 70 percent chance that regardless my baby will need heart surgery immediately following his birth. I have to have an amnio on Monday to rule out dibilitating chromosomal issues... I am getting a second opinion at Sick Kids Hospital next week (just waiting for them to call me) and all of the results for amino should be back in a week and a half. I do not understand how all of my other screens came back negative and how now they are checking for them all over again. I am train to stay calm, but all of this information that has been thrown at me in the last 36 hours is overwhelming. Any insight or experience would be SO greatly appreciated.
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Re: Devestated, confused and scared to death...

  • Krisdee123Krisdee123 member
    Just wanted to pop in and show some support. I don't have any experience with this I'm sorry, but I hope you are able to get some clear answers from the amnio. All the best to you.
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  • TinyDancer51510TinyDancer51510 member
    Also wanted to offer support. I hope the amnio gives you some better news. Please keep us updated!
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  • haileeshailees member
    Popping over from j16. So so sorry you are going through this! Hoping you get some answers and direction very soon. Wanted to send my support and prayers.
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  • MyelhsaMyelhsa member
    I'll keep you in my thoughts and prayers @andreachristine81

    I'm sorry you're going through this. My fingers are crossed that your amnio comes back with some good news.
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  • apinkpelicanapinkpelican member
    I'm sorry to hear you are going through this and am sending my thoughts your way for positive results. ((Hugs))
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  • Daphneh28Daphneh28 member
    No experience but sending thoughts and prayers. So glad you are getting a second opinion. It never hurts
    Lilypie Breastfeeding tickers
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  • SnoopylovesbelleSnoopylovesbelle member
    That's awful. I hope everything turns out okay and you get the answers you need. Thoughts and prayers for you and your little one.
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  • cjd&kcjd&k member
    Also popping over from Jan16 and am so sorry you're going through this. I will be keeping you and LO in mind.
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  • nickicb7nickicb7 member
    edited August 2015
    I'm really sorry to hear this @andreachristine81, I know from the j16 board that you have overcome a lot of struggles with this pregnancy, and I honestly hope the very best for you. My prayers will be with you and your little guy tonight.

    You said you are getting a second opinion from Sick Kids, are you in Toronto? If so I think that's a great idea. Sick kids is amazing.

    ETA:finish words
    STM - EDD June 24 '18
    DD - January 2016
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  • andreachristine81andreachristine81 member
    Thank you so much to everyone for the kind words and support... And yes @nickicb7 there have been a lot of struggles in this pregnancy. Until now, physically this pregnancy has been easy. Emotionally it's been a roller coaster. Regardless, I am stronger because of everything that has transpired thus far and am taking things one day at a time. It is MIND BOGGLING to me that the screens for all major chromosomal abnormalities have come back negative and now they are toying with the idea that there might be something wrong on top of the prediction that there is something wrong with his little heart. I can't wrap my mind around all of this. It's so much information overload at once. In top of all of this, I had to miss work the past two days and now I absolutely have to tell them about baby tomorrow. However, that is the least of my concerns right now though. It's just an added stress. One day at a time... I will keep you ladies posted. And again, thank you for your support <3.
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  • andreachristine81andreachristine81 member
    And yes I am in Toronto and happen to live ten minutes from Sick Kids Hospital. Thankfully.
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  • skfgskfg member
    Fellow J'16er. I am so sorry you are going through this and hope you get some answers soon.

    My baby has down's and it looks like there is a good chance there is a heart defect given what showed up on the anatomy scan yesterday. It looks serious given the way the tech responded yesterday. We are scheduled for a fetal echo in a few weeks at Children's.

    Sending love and light your way. It is a lot to process and be gentle with yourself. Keeping you in my thoughts.
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  • atetschneratetschner member
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  • claireloSCclaireloSC member
    I'm sorry to hear that. I hope things turn out to be less serious than they though. Best of luck to you.
    Baby Birthday Ticker TickerMarried DW <3 08.2013; AI 2x; IUI 6x; IUI #7 05.2015; DD born 2.2016 o:); Reciprocal IVF FET #1 on 11.18.2020 
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  • willashbabywillashbaby member
    We're all here for you, FX for quick and clean results. 
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  • mamaksweezmamaksweez member
    I hope you can find a little peace and calm soon. I'm so sorry you are going through this. Praying for good results for you and LO!
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  • ccoleemanccoleeman member
    From J 16 too, keepin you in my prayers!!
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  • mvhydemvhyde member
    Not more experience than you, but we seem to be walking down the same road together. I pray that all your amnio comes back with reassuring results. 
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  • mom2babybmom2babyb member
    Sorry to hear this! Just thought id let you know I can relate a little bit. My test for spina bifida came back negative as well then at my 20 scan they saw some soft tissue on his back. After that I found out my baby has a form of closed spina bifida and the test they do early on in pregnancy only identifies open spina bifida. I don't have any knowledge about the heart stuff but the bright bowels could be spina bifida related based on the research I've been doing. Hang in there....I know how hard it is to wait for these appointments to hopefully find out more information and then you're still left in the dark or with more worries and questions than before. Sending best wishes and positive vibes to you and your LO.
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