Tuesday, May 29, 2012

Answers

Thursday May 24, 2 months and 1 day after saying goodbye to Grant, we went to the geneticist to get the results of his tests and autopsy. We chose to have these done so we could possibly have answers as to a cause of his severe oligohydramnios (lack of amniotic fluid) and see if there was a chance for it recurring in future pregnancies. Our Geneticist is amazing. I work with her quite often and her bedside manner and empathy are wonderful. She actually came to examine Grant the day he was born and ordered all of the tests so our appointment was only to discuss the results. We learned that Grant had normal chromosomes and no gene defects. This means that there isn't a genetic cause for what happened, which is good. It means that the chances of it happening again are the same as it happening the first time. His autopsy confirmed what his ultrasounds showed us. He had severe oligohydraminos on ultrasound with a distended bladder and enlarged kidneys. He also had only 1 umbilical artery (which can sometimes correlate with renal issues). His autopsy showed that his kidneys were normally formed but slightly distended from urine back up. His bladder was very distended and thickened from being stretched so much. There wasn't a bladder outlet, meaning no way for urine to leave his body. While he was forming something didn't form correctly from his bladder to the outside of his body. Urine makes up most of the amniotic fluid so since it wasn't getting out he didn't have any. Amniotic fluid helps make lungs. His lungs on autopsy were only about 1/4-1/5 of the size they should have been for his gestational age. All of this together equals him having something called Prune Belly Syndrome. The chances of having a baby with this are 1/40,000-1/50,000. These odds don't seem all that high to me now but obviously it's pretty rare. Not all children with Prune Belly Syndrome have such severe oligohydramnios and some are able to survive pregnancy and outside of the womb. Grant however would have never made it. His lungs wouldn't have developed much more and he wouldn't have been able to breathe. Getting the results of his tests actually brought a sense of peace and closure.

Knowing that he didn't have a genetic cause makes me a little more comfortable deciding to try again. However, I'm still really scared. 1/40,000 odds are pretty good, unless you have already been the 1/40,000 and then it feels like 1/1 odds. Lots of moms and dads who have lost babies know how we feel as we embark on this journey to try again. I've lost the innocence of pregnancy. I know that if we ever get pregnant again I am most likely going to have a hard time being really excited until after my big ultrasound. This makes me sad. I loved being pregnant with Grant, even early on when I had morning sickness, but I'm afraid my next pregnancy is going to be covered with fear until I know things are ok. I'm also scared that it is going to take us another 3 years to get pregnant, but hopefully not. Hopefully things will go a little faster this time and we can soon welcome a healthy baby into our home.

15 comments:

  1. 1/40000 sounds pretty awesome to me! Our odds of a trisomy (any trisomy) in the future are now 1/100...which, like you said seems SO high even though it's really not. Will be praying for you! I guess we just have to hold our breath and take that leap of faith!

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  2. I'm praying lots and lots of prayers for you, Girl...most of all that you feel all the peace and love and sound-mindedness that God has promised...instead of a spirit of fear. It's something I had to ask Him for many, many times each day when I carried Jake and Parker both. I can't think of a time when I didn't worry, and I've learned that it really never ends. There's always something...skinned knees, learning ABC's. :) Love and Hugs!!

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  3. Huge hugs. This path is not easy, and it takes alot to try again and try to walk a graceful straight line...but, leaning on the beautiful women in this community helped me get there again, so know we all will be praying and lifting you up when you need us. :) xoxoxo

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  4. Oh I'm so glad that you were able to receive some definitive answers! There is just nothing worse than the not knowing. I'm praying daily for your next pregnancy to be free of any complications and stress free!

    Much love to you xoxox

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  5. Kristy, Thank you for sharing Grant's story with us, and I will be praying for you and your family's healing and recovery. I'm glad to have met you here!
    Blessings,
    Ann

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  6. Kristy,

    I'm glad to hear you have some answers and closure. It is reassuring to know that genetically, he was just fine. It's hard when you hear things like, "it shouldn't happen again", "this is very uncommon", and my favorite, "you can try again". While people say those things to be encouraging and supportive it doesn't make trying again any less stressful. I hope that you can find peace in trying again. I know Grant and Clara will be looking after us as we travel that road. *big hugs* with love, Victoria

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  7. I'm glad you have some answers, my sweet friend and that they were positive answers. Continuing to pray for you and your family and looking forward to the day when you welcome your baby home.

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  8. Well I ma glad they could give you some answers. We really got none and it is hard. I am praying you will get pregnant and have a beautiful healthy happy pregnancy. Hugs my friend :)

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  9. I'm sending my prayers! I just lost my Caleb at 22 weeks on 4-17-12 due to IC. We chose not to have an autopsy and sometimes I wish that we had. Things just happened so quickly we didn't know what decisions to make. I find it incredible you foster, by the way!

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    1. Thank you for the kind words. Do you blog? I'd love to follow
      Your story. I am so sorry about the loss of your son.

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  10. Your little Grant Oliver is absolutely precious!!

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  11. I had oligo with my pregnancy as well. My sweet Abigail had polycystic kidney disease. praying for you.

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  12. I am so glad you were able to get some answers, Kristy. I think that having answers helps us have some closure and allows us to move forward a little easier. Of course, the pain is still the same though. I will be praying that you are able to conceive easily and that your next pregnancy goes smoothly with no complications!

    Stefanie
    http://www.livinglifewithoutchase.blogspot.com

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  13. Hi there Kristy,

    It sounds like it was helpful for you to have some answers. I can relate to your pain of thinking about trying again and wondering what will happen...and thinking about how it will be hard to be happy. I'll pray for you!

    Blessings,
    Melody

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