View Full Version : Just joined today! Mommy to bi coronal Beautiful Sophie
10-30-2008, 04:23 PM
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
10-30-2008, 04:25 PM
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.
10-30-2008, 04:27 PM
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.....
10-30-2008, 04:51 PM
Welcome to cranio kids!! You'll get a ton of support here, I'm sure someone can answer your question for you.
10-30-2008, 05:01 PM
:colorsto 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...:thud
10-30-2008, 05:46 PM
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! :-)
10-30-2008, 09:23 PM
Welcome!! You'll find so much support here!!!
10-30-2008, 10:38 PM
Congrats on your baby girl and welcome to CK. We would love to see pics. We have both SC and Muenke babies on here :)
10-31-2008, 05:01 AM
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
10-31-2008, 03:23 PM
I looked at your pics - you and Sophie are both beautiful :)
Hi Ingrid and welcome to the site! So sorry to hear you are going through all these emotions, but we have all been there, and for me it wasn't too long ago. My son was bicoronal and has muenke, I have since been tested and will be finding out soon whether or not he got it from me.
Where are you located? I hope I didn't miss that in your post. I know surgery is heavy on your mind, but try not to worry and stress too much, and enjoy this newborn time with Sophie, they grow up way too fast!
10-31-2008, 03:41 PM
HI! Welcome to CK! I know exactly how you are feeling as my son was diagnosed at 3 days old with metopic. It is completely overwhelming not to mention all the stupid hormones don't help at all! Hang in there! Your little girl will amaze you! And you'll amaze yourself. Glad you found us, this site certainly saved me from going completely crazy.
10-31-2008, 04:42 PM
I am mommy to a bicoronal kiddo and was a right coronal myself. You can read all about our journey at the link in my signature. We were tested for Saethre-Chotzen, and the results were negative. The next one they would test for us is Crouzon's. If you have any questions, feel free to ask! You have come to a great place.
10-31-2008, 11:18 PM
You will find that this is a wonderful resource and everyone on here is so friendly. It helped me tremendously when my daughter was diagnosed with Right Coronal and we are now just over two weeks away from surgery. Sophie is a beautiful baby - congratulations.
11-01-2008, 05:01 PM
:howdyIngrid & Sophie, :colorsto Cranio Kids, and congrats on the birth of your baby.:party. It will get easier...and there are parents, some of whom have already shared, who will offer some great info and advice that will make it a little easier to go through....it's hard to do at times, but please take it easy...
11-05-2008, 12:29 AM
Hi! Welcome. I am a bicoronal mommy also. If you have any questions just ask away. My daughter was tested for Muenke and Sathre Chotzen and they both came back negative. Mikayla had a cranio vault reconstruction at the age of 2 in 2005. She has also had strabismus surgery to correct her eye muscles. Before her CVR she had a tonsil and adnoidectomy. She should be done with surgeries until she is a teen and then she can decide if she wants some cosmetic things done. This is a very overwhelming time. It is harder on us than the kids though. They are way tougher than we are!
11-08-2008, 02:25 AM
Welcome to cranio kids, i am bicoronal myself. You will find heaps of support here! If you have any questions we are all glad to help!
11-17-2008, 01:13 PM
Sorry for my delayed welcome! My daughter is 9mos old and was bicoronal and metopic. She also has Saethre-Chotzen. We knew about the cranio before she was born, but SCS was diagnosed by bloodwork later. Feel free to check out her Caring Bridge site (below) and let me know if I can help at all.
Congrats on your beautiful baby girl!
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