Pregnant after a Loss

Update on Baby Boy

The last two weeks have been scary and full of tests. We have spent around 15 hours in the last two weeks at Lucile Packard Children's Hospital at Stanford. Today we met with the Pediatric Neurosurgeon. 

The surgeon says our baby has Meningocele, which is the least common and least severe forms of Spina Bifida. Our baby does have a defect in his Neural tube but it is small and covered by skin (which is why I passed the screening test). The Dr said our son has the best 3-5% of all cases. 

The defect happened the first few weeks or pregnancy. The defect cant get bigger or worse. It is just a gap that didn't close. He has no nerve issues.

He will need surgery to fix this. They don't know when and won't until he is born. If this hole is completely covered and no spinal fluid is leaking he can wait until he is a month old. If not surgery will be in the first 48 hours. 

His long term prognosis is excellent. The Dr said cases like this have no impairment to movement or bowel function. Many cases of Spina Bifida can cause damage to the brain. Our sons cases is NOT one of those. His brain looks normal. Everything else besides this one defect is normal. 

The Dr said "You are one of the lucky ones. Most cases do not have a happy ending but your baby does". 

Needless to say I cried for much of this consult. 

There is nothing else that be done now. Now we wait until he born, likely at 38 weeks via c section. Once born he will be taken to NICU right away for evaluation with the surgeon. The surgery part is scary but I cant think about that right now. 

I am so relieved his is a mild case. yes, this will be a rocky start but to know some day he will run around a playground means everything to me.  Now I can imagine a happy future for him.

I appreciate so much all the prayers, kind words, and good vibes. It has meant the world to me know we have people pulling for us. Thank you so much from the bottom of my heart.
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Re: Update on Baby Boy

  • I am so glad that things are looking so positive! Glad you finally have some answers. :)
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  • I am so glad to hear a positive update. I am sure it is scary with this diagnosis but also glad that his case is not severe. Huge hugs!
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  • This is amazing news! I'm sorry that you have to deal with any of this, but I'm so glad things are positive for his future! (((hugs)))


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  • km_mdkm_md member
    So many ((hugs)) kk. I cannot imagine what you must be going through right now but I'm so glad that your son has such a good prognosis!


  • I am so happy to hear this! That is great news!
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  • Oh my goodness! I am so very happy to hear this! What amazing news! I feel a little teary eyed reading this. HUGS!!
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  • I already responded over in Dec but wanted to post here too. I'm so glad that you got some good answers and will be praying that the surgery timing works out in the least stressful way possible.
  • O I am so happy for the great news from the doctors today!! Lots of {hugs}
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  • I am so happy to hear this news!!
    ((HUGS))
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  • That's very, very wonderful news. I'm so happy for you!
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  • omg I'm so so happy to read this update, I just want to hug you! So happy you're little guy is going to be ok! *HUGS*
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  • I love this update!  I know there is still a scary road ahead, but so glad you were given the best news possible in the situation!

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  • ZAngelZAngel member
    I'm very happy to hear he has a mild case and will likely have a good outcome!  I still can't imagine what you are going through but it's great to hear the positive.
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  • BuckyCBuckyC member
    I'm so happy to hear that you will be dealing with a mild case of this. I'll continue to keep you and your LO in my thoughts.
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  • Absolutely thrilled at the positive news you got today. Continuing to send vibes, Ts and Ps that the rest of your pregnancy goes well. *hugs*
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  • This is such a great update! I'm so glad that your baby boy is going to be okay! I will pray that the surgery can be avoided until he is a month old! (((Hugs)))

  • I am so glad you got the best possible scenario and your little boy is going to be ok! ((hugs))
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  • I'm so happy to hear this news.  Big hugs KK!

     

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  • I'm so glad to read this update! It seems you got the best news possible for your situation. Continued prayers and good thoughts headed your way!

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  • This is such a good update! I am so glad to hear that they are so positive and optimistic about this. As hard as it may be I really hope you can relax and enjoy the rest of your pregnancy! 
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  • Oh this is great news! Continued prayers for you and your son..
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  • What wonderful news to hear!!!
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  • These are such great news to get! I pray everything works out to plan going forward!
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  • jhs121jhs121 member
    Great news!  {{{big hugs}}}

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  • I am so glad to see this happy update. Good luck!
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  • This is such a huge relief! I'm so happy for you that you've been given the best possible diagnoses in a previously hopeless feeling situation.
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  • I am so happy to read this and see you got the best possible news!  I have been thinking of you!  Sending you and your little boy continued prayers!
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  • Very glad that you got answers and that things will be able to be corrected.

    *hugs*

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  • Thats so great!!!! 
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  • This is good news ((hugs))
  • Lurking

    I'm glad you got the best possible answers. I teared up when I read that quote from your doctor. Yay!

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  • I am so glad that your baby boy has such a mild case. I'm sorry you had so much worry and stress. Now you can get on to the business of getting ready for your boy and enjoying your pregnancy. 
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  • How scary! That is great that it's the best outcome for that diagnosis, though. NICU doctors and nurses are amazing from what I've heard, and will take good care of your whole family. Sending T&P your way!
  • KK, I am so happy your little guy has the best case scenario. I will continue to keep you in my thoughts and send positive vibes.

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  • This is wonderful news! So happy for a positive prognosis!
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  • Great news!

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  • This brightened my day - so glad to hear that the prognosis was the best case scenario.  Continued prayers for you and your little one!
  • AmyM72AmyM72 member
    Glad to hear that your little guy will be fine, that must be just terrifying.
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  • What a great update, I'm so glad to hear the good prognosis!!
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