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Calling all NW Ohians... Urgent...

Discussion in 'The Okie Corral' started by Indy_Guy_77, Aug 24, 2012.

  1. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    Hi all,

    My wife & I got word last night that her sister's baby has been diagnosed with Spina bifida (http://en.wikipedia.org/wiki/Spina_bifida). Baby is still ~15 weeks or so from due date.

    They are in urgent need of GOOD recommendations for a Children's Hospital, a pediatric neurosurgeon, and, equally important, a SUPPORT GROUP.

    I hate to call their nearest largest town (Defiance) a po-dunk town that doesn't offer any of that - fact is, though, that Defiance is just too small to offer the healthcare they need right now.

    So I'm turning to GT's several thousand members.

    I will take any and all recommendations on the healthcare aspect - but I'd really like some support group information if anyone can provide it.

    Thank you in advance,

    -J-
     
  2. stolenphot0

    stolenphot0 RTF2 Addict

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    Sorry to hear of their situation. I am sure it's tough.

    Two words for medical care that's worth the trip - Cleveland Clinic. Other option is Children's in Columbus or come down to Children's Medical Center in Dayton. It's a top notch pediatric center.

    As for support groups, I don't know of any.
     

  3. Gallium

    Gallium CLM

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    IG,

    Have they yet arrived at a determination as to what type/severity?

    We will keep her and the baby in our thoughts and prayers.
     
  4. Combatcomm

    Combatcomm

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    Children’s hospital in Akron use to be a great hospital. Igrew up in a town about 20 miles away and they were where you went if you had seriousillness. I don’t know how they are now as I left over 30 years ago when Ijoined the military.
    Prayers sent for your family.
     
  5. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    I don't know what THEY might know.

    When my wife called & talked to her sister yesterday, sister didn't even mention it to my wife. Then my wife gets a call from her "dad" (sister's dad - she's technically my wife's half-sister) and he's completely bent out of shape upset about it. That's how my wife found out.

    Hopefully there's an A+ place to be in Columbus - logistically that'd be much easier for them. That's my thinking, though - and I'm not in that situation.
     
  6. Mrs.Cicero

    Mrs.Cicero Wayward Member

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    Try Rainbow Babies' and Childrens' Hospital in Cleveland. I was treated there (25 years ago). Sorry I don't know Columbus well enough to have any clue there.

    Mrs.Cicero
     
  7. hamster

    hamster NRA Life Member

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  8. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    Thanks for the suggestions, folks. I appreciate it.

    I'm passing along the info.
     
  9. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    Ok - found a support org. not too far from their home.

    Seems the Cleveland Clinic is a much bigger animal than the Children's Hosp. in Columbus.

    We'll see how well some of this information is received...
     
  10. vikingsoftpaw

    vikingsoftpaw DEPLORABLE ME!

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    Cleveland is home to: University Hospital's RBC, Rainbow Babies and Children's Hospital. It's top notched.
     
  11. PPinesRon

    PPinesRon

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    My wife and I were in a similar situation. We went through testing, were given the option to terminate the pregnancy before the end of the 1st trimester because the diagnosis was a severe case of spina bifida. We couldn't/wouldn't terminate. The night before the birth, the baby failed the stress test, doctor said the cord was wrapped around the baby's neck. Those 7 months were the most stressful I've ever been through. Bottom line, the "baby" just graduated law school and has zero physical issues, other than trying to keep a few extra pounds off (as most of us do). A coworker also had the same diagnosis, options and his daughter was born with no issues either about the same time as we did.

    I don't want to give you false hope, but my advice would be to wait and get a good diagnosis (or 2 or 3) after the baby's born. Be strong for Mom and deal with what you got when you know. Good luck. My thoughts and prayers are with you and your family. Take care.
     
  12. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    Thanks for that, sir!!

    As of yet, I don't know what the severity has been Dx as - my wife and I may never know. She's being tight-lipped about it - and doesn't seem to be reaching out to any family for help (that I know of - at least not her maternal family)

    One of my cousins is right around 17 years old - she too has S.B. I believe that she was one of the first to have undergone in-utero surgery if I remember correctly.

    She's only a few weeks removed from her 32nd or 33rd surgery. I guess her S.B. was "severe" - but quite treatable (as opposed to severe and not treatable, I suppose?)

    She leads quite a busy life - camps, on a traveling wheel-chair basketball team, she SCUBA dives, and will be driving soon - as soon as the monies can be found to outfit a car with hand controls. She CAN walk - but it's a struggle.

    We just want to be sure that we're available should we be needed.

    -J-
     
  13. .264 magnum

    .264 magnum CLM

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    That's so awesome.
     
  14. PPinesRon

    PPinesRon

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    I've never been so scared in my life. I hope nobody has to go through it. I was before, but I'll forever be truly greatful for everything I have.
     
  15. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    My wife & I are concerned at how they're REALLY taking this - mentally & spiritually speaking. This is on top of a first baby who was 5 weeks early (she's about 15mos old now) who may very well be slightly developmentally delayed herself due to it.

    Again - my wife and I just hope to "be there" for them - but it's difficult since they're 3 hours away.

    -J-
     
  16. Indy_Guy_77

    Indy_Guy_77 Thread Killer

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    Update : baby Belle was born this morning around 0930 via scheduled C-Section.

    All things are well, all things considered. Baby has surgery in the morning to repair the external site. They'll be a few weeks in the hospital to heal before being allowed to take her home.
     
  17. Gallium

    Gallium CLM

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    Thanks for the update. I am still rooting for her.
     
  18. PPinesRon

    PPinesRon

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    Ditto, prayers also. Keep us updated.
     
  19. airmotive

    airmotive Tin Kicker

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    Ya know, Peyton Manning set up a decent li'l shop here in Indy.
     
  20. railfancwb

    railfancwb

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    Maybe too far away, but Vanderbilt in Nashville TN and Danny Thomas in Memphis TN both have good reputations for child care.


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