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Update on Baby Boy

74dragonfly74dragonfly member
in Pregnant after a Loss
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

  • Julieturner507Julieturner507 member
    I am so glad that things are looking so positive! Glad you finally have some answers. :)
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  • Adam2010Adam2010 member
    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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  • linzeeh80linzeeh80 member
    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!


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  • csspencercsspencer member
    I am so happy to hear this! That is great news!
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  • egsquaredegsquared member
    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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  • bethLenellbethLenell member
    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.
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  • limeblue44limeblue44 member
    O I am so happy for the great news from the doctors today!! Lots of {hugs}
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  • CaliforniaDream87CaliforniaDream87 member
    I am so happy to hear this news!!
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  • MamaWombatMamaWombat member
    That's very, very wonderful news. I'm so happy for you!
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  • mightymousymightymousy member
    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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  • RubiksElfRubiksElf member
    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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  • OSUWifey09OSUWifey09 member
    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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  • nbcarlsonnbcarlson member
    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)))

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  • ellajune2012ellajune2012 member
    I am so glad you got the best possible scenario and your little boy is going to be ok! ((hugs))
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  • fluttergirlmoonchild79fluttergirlmoonchild79 member
    I'm so happy to hear this news.  Big hugs KK!

     

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  • lindsayanne14lindsayanne14 member
    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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  • ShhItsASecretShhItsASecret member
    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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  • AmeliaKrisAmeliaKris member
    Oh this is great news! Continued prayers for you and your son..
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  • katharine25katharine25 member
    What wonderful news to hear!!!
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  • funny bunnyfunny bunny member
    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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  • GavinRonansMomGavinRonansMom member
    I am so glad to see this happy update. Good luck!
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  • ravenclaw1ravenclaw1 member
    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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  • jenohoustonjenohouston member
    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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  • allureaallurea member
    Very glad that you got answers and that things will be able to be corrected.

    *hugs*

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  • ShaungelaShaungela member
    Thats so great!!!! 
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  • BethRN1987BethRN1987 member
    This is good news ((hugs))
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  • Junebug060609Junebug060609 member
    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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  • kiki1978kiki1978 member
    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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  • ErinE683ErinE683 member
    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!
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  • JordyInIndyJordyInIndy member
    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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  • maycouplemaycouple member
    This is wonderful news! So happy for a positive prognosis!
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  • heather52904heather52904 member
    Great news!

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