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  1. 06-13-2008 05:47 AM #1
    Everest
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    Default New to this amazing forum

    Hi everyone, I have been around for some weeks and I must say that I find this forum very helpful. Thanks to all administrators, moderators and everyone else for keeping this forum very active!

    I’m the father of André who was born on October 27 last year in the Netherlands (we are actually Portuguese but living in the Netherlands). When he was 1.5 months we noticed a ridge in his head, but the doctor said it was "normal". I guess a lot of you experienced similar situations, right? After several months being worried about the strange shape of his head, in April another doctor saw him and suspected he had craniosynostosis (the saggital suture closed). Of course as parents we got really scared by the possible need for a surgery and had little information. At that time I was spending hours on the internet and as soon as I saw pictures of other children I realized that my son had it. Later it was confirmed by X-ray that André needs surgery.

    The surgery is planned for either September or October this year. I will write more in detail in the "our Stories" section.
    Gonçalo
    ______________________________________
    Father of André (10-27-2007)
    Surgery to Saggital Cranio (metopic suture partially closed) 10-15-2008 @ Sophia Child Hospital in Rotterdam (Netherlands)
    We are on the other side!

    View André’s story: (not updated... yet)
    http://craniokids.org/support/showthread.php?t=5483

    My hero (pre-op picture):
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  2. 06-13-2008 07:16 AM #2
    Katie
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    Welcome to Cranio Kids! I'm glad you found us and are finding helpful information here. Andre looks like a cutie As you already know, we've had many stories like yours where parents were told it was "normal", I sure wish there was more awareness out there.
    I'm looking forward to reading your story, and again, welcome!
    Momma to Dillon 6/25/04 (metopic and bicoronal) and Aaron 2/24/08, and wife to Doug.
    CVR/FOA 11.16.04 @ 4.5 months old
    Second surgery 1.5.10 @ 5.5 years old (all went excellent!)
    Dr. Ian Jackson and Dr. Karol Zakalik Providence Hospitals, MI
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  3. 06-13-2008 07:18 AM #3
    Abby'sMom
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    Default Welcome Goncalo!

    I'm so glad you found us. There are a lot of parents on here with saggital babies and I'm sure they will say "hello" soon. I'm looking forward to reading your full story. You'll be amazed by the support found here.

    Andre is a handsome big boy!
    Mandy,
    Mommy of two gifts from above...
    "Abigail Hope" born 10/23/2007 (bi-coronal)
    and "Julianna Grace" (no cranio) born 5/27/2005
    *Abby had endoscopic surgery on Dec. 26, 2007 at Children's Hospital in Boston.
    [FONT=Palatino Linotype][SIZE=3][COLOR=#008080][COLOR=darkorange]
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  4. 06-13-2008 07:31 AM #4
    Janet
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    Welcome to CK....I'm glad you introduced yourself. You have a cutie pie. You'll get a ton of support here.
    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. 06-13-2008 07:42 AM #5
    mattricia
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    Welcome to craniokids, Goncalo. It is a wonderful place for information and support. It saved my sanity many times while we awaited Jack's sagittal surgery.

    Andre is adorable and he definitely appears to be in the sadgy club. I really got used to Jack's sadgy look, and it took me a while after surgery to get used to his new round noggin. Now instead of narrow head/ chubby face, it's the other way around, which is how it's supposed to be, but you just get used to your child being how they are!!!

    Looking forward to learning more about your family and answering any questions you may have! (I don't know how to do the accents for your name and Andre's! How do i find them??? :) )

    -Tricia


    Henry Grant - 2.5.04

    Jackson Richard- 7.2.07 - sagittal craniectomy/CVR on 5.14.08 @ Mott Children's (UM) - Drs. Muraszko and Buchman



    Jack's montage:

    http://www.onetruemedia.com/shared?p...edium=text_url

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  6. 06-13-2008 09:07 AM #6
    melsch
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    Welcome to CK! This site is a wonderful place for support and information!
    Melissa
    Mom to 2 beautiful angels!

    Kayla (8/99)
    Logan (7/07)
    Metopic sugery Nov. 7, 07'

    www.caringbridge.com/visit/loganschaefer
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  7. 06-13-2008 09:48 AM #7
    fullhouse3b2g
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    Hi and Welcome to CranioKids!
    Proud Mommy to

    Caleb -17
    Ethan -13
    Joanna -11
    Olivia -9
    Isaac -5-Metopic Cranio, no surgery;Chiari Malformation and Posterior Fossa Cyst, surgery 4/1/08 & 12/03/08; Pseudomeningocele and CSF leak, surgery 12/18/08; Multiple congenital Heart Defects, Autism, Multiple Birth Defects

    http://www.caringbridge.org/visit/i.m.lucky
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  8. 06-13-2008 11:01 AM #8
    dannlark
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    Welcome! You've come to the right place for support and information. Sorry you've had to join us though, I know this is a scary time for you. Your boy is just a cutie and I'm sure he'll be just fine when all is said and done. Don't be afraid to ask any questions you have, someone here will be able to answer them, I'm sure.
    Larkin
    Mom to 3 boys: Aidan 9/8/2000 Camden 7/29/2003 Ian 7/29/2007 - Upper end "Mild" metopic. Surgery 8/27/08, Dr. Fearon, Medical City Dallas. We're on the other side!!!
    http://www.caringbridge.org/visit/ianrodriguez

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  9. 06-13-2008 11:34 AM #9
    beccad
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    Welcome to CK! I'm so glad you found us here. It is truly amazing how many countries we are now representing. I'm sorry that you are going through all of this it is definitely a roller coaster ride of emotions. Your little guy is such a cutie. This place has been a place of refuge for us parents going through this cranio journey. I do hope you find the support that you need here. Ask anything or feel free to vent some frustrations. There are families on both sides of this journey and someone will be able to help. I'll keep your family in my prayers.
    Becca:
     Mom to three wonderful kiddos:
    Noah is 8
    Elijah is 6
    Julianna is 3(Left Coronal Cranio)
    Vanderbilt Children's Hospital Nashville, TN
    Surgery April 15, 2008 (canceled because of a cold and fever)
    Surgery rescheduled June 26, 2008
    2nd surgery April 14, 2011
    WE ARE ON THE OTHER SIDE
    www.caringbridge.org/visit/juliannaharber
    www.harberclan.blogspot.com

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  10. 06-13-2008 12:03 PM #10
    isingtomykids
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    Default Welcome!

    Hi and welcome!

    You are right that this is an amzaing forum. Everyone is very supportive. You will find that you are not alone. It is comforting to know that others have experienced what you are about to encounter.

    So... you live in Wageningen? I have an aunt and uncle who live in Wagneningen. Last September we went to a family reunion at their house. We all took a long walk down by the river. It was a fabulous visit. We stayed in a small town (can't remember the name at this time) by Appeldoorn.

    I love Holland!

    Hopefully, I am sure that there are specialists who can help you in Holland...perhaps in one of the bigger cities like Rotterdam or Amsterdam.


    Kaitlin Mae Diver 2/10/08
    Craniosynostosis in May 2008
    [FONT=Comic Sans MS][SIZE=4]Stephanie Diver
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