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  1. #1

    Default Boston Children's Hospital

    Has anyone gone to Boston Children's for surgery or general spina bifida stuff?


    Thank you!

  2. #2

    Default

    We don't have any experience with Boston Children's, but my son (now age 3) was born at Mass. General and has been seen there ever since. So if you have any questions about that one, I'm happy to try to help.

    I know that Children's has a spina bifida clinic that tries to coordinate care between the different specialists so you can do several appointments in one day. That can be a good option for people who live far away from the hospital, or who want a little extra help juggling relationships with multiple doctors. We opted not to go that route for a few different reasons (we really love the neurosurgeon at MGH and wanted to stick with her, I don't mind being my son's "case manager," and sometimes the clinic format makes it harder to guarantee seeing the same doctors every time you go). But I can also see why others might prefer the setup at Children's.

    Sorry this reply is coming over a month after your question. I don't log on here often at all anymore, but for whatever reason I did tonight and just happened to see a Boston-area question!

  3. #3
    Join Date
    Dec 2008
    Location
    Tucson, AZ
    Posts
    1,080

    Default

    We went once to see Dr. Warf for a second opinion as he's considered one of the absolute best neurosurgeons. I have a few friends that have done the same as well. He was AMAZING and saved us a surgery
    Jamie, mom to Conner, Ramya (SB), Deena (OI) and Madilynn (SB) and wife to David. Madilynn was diagnosed in utero with spina bifida and hydrocephalus and Ramya also has spina bifida and hyrocephalus. Check out our blog at www.aworthyjourney.com!


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