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Thread: Just joined today! Mommy to bi coronal Beautiful Sophie

  1. 10-30-2008 04:23 PM #1
    sophie'smom
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    Default Just joined today! Mommy to bi coronal Beautiful Sophie

    Hello Everyone,
    I am so glad to have found this site. I just gave birth 1 month ago and my precious little girl was diagnosed with bi coronal cs. I am just processing all of this information and learning as much as possible about what this all means. She is also being tested for 2 syndromes - Muenkes and SC (hard to remember the spelling but I will give it a try Sathre Chozen). If anyone can share useful info, I would be so grateful as I must admit I am still a bit emotional about it all. Thank you all so much.
    Ingrid - Sophie's mommy
    Mommy to beautiful Sophie
    bi coronal baby
    CVR and FOA April 1, 2009
    UCSF in SF by Hoffman (ps) and Gupta (ns)
    We are on the other side!!!
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  2. 10-30-2008 04:25 PM #2
    Wyatt's Mom
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    Welcome to craniokids! I'm sorry you have to be here on this crazy cranio roller coaster but we will all do our best to support you.
    I know there are a few mommies with kids who have syndromes so they will chime in here shortly I bet. If you have time check out the syndrome section.

    Sophie is a beautiful name. She will do great when her surgery comes, these kids are so strong.
    Sarah
    Proud mommy of:
    Logan - Jan '06 No Cranio
    Wyatt - April '07 Metopic & Sagittal - Surgery at BC Children's Hospital Feb 27th, 2008
    Cooper - Sept '09 currently have some concerns with his metopic suture, we've seen a neurosurgeon but are waiting and watching



    View Wyatt's Story: http://www.craniokids.org/support/showthread.php?t=2607
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  3. 10-30-2008 04:27 PM #3
    three.little.boys
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    welcome to CK!!!! We have lots of bicoronal babies on here, as well as a couple with each syndrome, so you should have a lot of support here!!

    Congrats on your new baby...Sophie was our "girl name" if we ever had a girl.....
    [FONT=Arial Black]Sadie [/FONT
    Ethan 8-11-02
    Gabe 4-13-04
    Quintin 4-17-07 (metopic CVR/FOA 2/19/08)

    http://www.craniokids.org/support/showthread.php?t=2498

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  4. 10-30-2008 04:51 PM #4
    Janet
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    Welcome to cranio kids!! You'll get a ton of support here, I'm sure someone can answer your question for you.
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips

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  5. 10-30-2008 05:01 PM #5
    Haydens_Mommy1122
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    to CK!! This is a great place to recieve support and advice from other mommies that have gone through the same journey that you're going through!! Congratulations and enjoy your new baby girl, they grow up way too fast...my daughter is going to be 9 in Dec. yikes...
    Tina

    Mommy of 2 wonderful kids
    Alyssa 12-19-99 no cranio
    Hayden 11-22-07 left coronal synostosis
    Torticollis
    Endoscopic surgery 12-14-2007
    Cvr/foa 10-17-2008
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  6. 10-30-2008 05:46 PM #6
    Liam's mom
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    Welcome to CranioKids! My son was diagnosed with bicoronal as well. At the beginning, when we met with a geneticist, she said Liam had Saethre-Chotzen Syndrome also. But, then the surgeon didn't want to classify Liam as syndromatic because he had too few symptoms. So, the jury is still out on that one. But our stories may be similar, so if you have any questions or just need a friend, I'm here.

    Congrats on Sophie and Good luck with everything! You'll be surprised at how resilient these kids are! :-)
    Liam Paul
    Born: December 19, 2007
    Endoscopic surgery for Bicoronal: March 13, 2008
    FOA surgery: February 24, 2009
    Became BIG BROTHER to Connor Mitchell: October 26, 2009
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  7. 10-30-2008 09:23 PM #7
    Mindy
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    Welcome!! You'll find so much support here!!!
    Mom to Riana 9/19/05, Shane 7/5/07 (mild metopic cranio- no surgery required), Addison 6/16/12
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  8. 10-30-2008 10:38 PM #8
    Tawnia
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    Congrats on your baby girl and welcome to CK. We would love to see pics. We have both SC and Muenke babies on here :)
    Azia-lynn's Story: http://www.craniokids.org/support/showthread.php?t=2458
    Surgery Pics: http://craniokids.org/support/showthread.php?t=2019

    CVR/FOA Oct 9th, 2007
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  9. 10-31-2008 03:45 AM #9
    Shar
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    Welcome, Ingrid!!!
    Shar
    Mom to H (11/2007 ~ born with a Metopic Ridge, no surgery needed)
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  10. 10-31-2008 05:01 AM #10
    mrs j
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    welcome to ck, and congrats on yovr davghter. my boy is/was metopic, no syndromes so i cant help with yovr concerns at the minvte, there are lots of mvms who can thovgh, yov will get lots of info and svpport here, welcome again.xxxx




    Heather



    BRADLEY 5..... METOPIC CRANIO, cvr/foa performed on 14th February 2008, by Mr Wall at the John Radcliffe Hospital,Oxford.

    Kirsten 7 (kidney duplex,ureteroceole)
    Darren 12
    Marcus 16
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