Late Term and Child Loss

Potter's Syndrome

I am sorry this is so rambled. It is still very hard for me talk about.

I lost my baby boy on Nov. 13, 2012 at 2:38pm. I was around 20 weeks (not sure of the exact due date because it kept changing. Every time I went for an ultra sound the date kept getting pushed back because he was developing slowly) At my 18 week anatomy scan the doctors told me they thought my baby was going to die. He did not have enough amniotic fluid to develop lungs successfully, they could not find his kidneys, and his intestines look calcified. They sent me for a biopsy of the placenta one week later. At that appointment we found that his heart beat was gone. I checked into the hospital later on that evening and spent 4 days in labor. I eventually had my little boy Grant and he was beautiful.

This has not officially been labeled Potter?s Syndrome yet (they are still waiting for all the test results and autopsy findings) however that is what they are leaning towards right now.

I was wondering if there is anyone else out there who has gone through this. I am completely healthy, so is my husband, and there has never been anything like this in either if our families before. I would just like to know I am not the only one.

 

Re: Potter's Syndrome

  • I know there use to be someone on this board who lost their son to Potter's. she has since gotten pregnant again and moved on but I am not sure if she still lurks. I am so sorry for the loss of sweet Grant. HUGS
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  • I'm so sorry for your loss. I have no experience with that syndrome but obviously I have experience with losing a child. I'm the first one in my family to have a stillbirth and both my DH and I are young and healthy. Sucky things happen for no apparent reason. I'll be thinking of you and Grant.
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  • I am so sorry for the loss of your Grant. I know there is nothing we can do to take the pain away but I hope you can find some comfort and support knowing that we understand your pain and are here for you on this journey.


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  • I am so incredibly sorry for the loss of Grant. No one wants to find themselves here but I hope you find comfort and support like I have here.

    We lost our daughter to a genetic condition unique to her as well in September. Please feel free to private message me. Sending you lots of hugs.
  • I am so sorry for the loss of your sweet little baby. Please know you are not alone, all of the women here understand the pain you are going through and are here for you.
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  • I am so so sorry for the loss of your sweet baby boy, Grant.  My thoughts and prayers are with you.  We are all here to support you and help you in any way.  ((hugs))
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  • You are not alone.  My husband and I are both healthy and have no genetic issues in our families to our knowledge.  Nevertheless, we lost our daughter to what they believe to be an incredibly rare, always fatal, probably recessive genetic condition.

    Before this happened I thought that only happened to *other* people with a *history* or *markers* but that is not true...it can happen to anyone.  I met a girl through my loss who lost her daughter to Potter's Syndrome.  She has 2 other healthy children, one of them since the loss.  

    There is hope, but the grief journey is long and difficult.  We are all here for you.

    Hugs,

    Jenn 

    We are so thankful that our second daughter, Lillian Elizabeth "Lily", was born healthy and happy on February 11, 2013.  We love her to pieces.  

    We lost our first daughter, Hannah Grace on May 4, 2011.  She was buried on May 14 during a beautiful service at my home church. We are grateful that if she could not be here with us, that she is healed and whole with the Lord. We look forward to the day when we will get to meet her. We love her so much.


  • I'm so sorry for your loss! My thoughts and prayers go out to you and your family.

    I'm 27 weeks pregnant with a baby boy also suffering from potters syndrome. I know how hard every day is. My doctors tried to tell me to end my pregnancy at 14 weeks but my husband and I knew that wasn't right for us. So we've just had to have faith that God is in control and we pray for a miracle. No matter what the outcome is I know that every life big and small has purpose in this crazy world! And I know I've learned so much from this baby and I'm thankful for every minute with him and for every kick and wiggle I feel.

    If you wanna talk or have questions I'd be happy to help! Message me any time vvgregoriogmail.com.
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