View Full Version : Hi Everyone
01-11-2007, 04:21 PM
Hi everyone. My daughter Shelby was born in September 2006 and has since then been diagnosed with bicoronal craniosynostosis and possible Pfeiffer's Syndrome. She is scheduled to have corrective surgery on February 8, 2007. I just wanted to see if there are any other parents out there who have already gone through this with their child and if there is any advice that you might have to give. I am not quite sure what to expect and what is expected of me with regards to her surgery/recovery. Are there any parents out there who have a child with Pfeiffers and bicoronal synostosis? I am so new at dealing with this, especially since this is my only child. The doctors have been unable to find a genetic mutation, but the genetic specialist has said that she thinks Shelby definately has syndromic craniosynostosis. I am curious as to what the future holds for us. Please reply if you can. Thank you very much.
01-11-2007, 04:51 PM
Hi Courtney, Welcome to the group. You have found a great group of parents who are very knowledgable about Craniosynostosis.
My son, Austin, had Right Coronal Cranio, and his surgery was done at CHOC (I would recommend the surgeons at CHOC to everyone. They did and excellent job on Austin). Where are you going for surgery?
It is very normal to feel very overwhelmed, stressed, and emotional right now. After surgery, Shelby will have a worse sleep pattern than a newborn baby, but only for a few weeks. After that, she will be back to her normal self.
Feel free to ask any questions. A good place to read is the "Our Stories" section.
Here's a book we made for Austin's doctors about 3 months ago. It may help as well.
01-11-2007, 05:11 PM
Hello and welcome although I had a sagittal case. I understand the struggle with diagnosis and surgery. It's very hard to deal with when it's your baby...but everyone here is amazing and very supportive. Good Luck!
01-11-2007, 06:50 PM
Just wanted to say :welcome. I'm glad you have found us and hope that we can help you. Your daughter is ADORABLE!!!!
Your daughter will amaze you at how well she does. They are so amazing with how they handle everything. The hardest thing (after handing her over to the nurses for surgery) was the sleep issues once we got home. I really think the whole surgery is harder on us that it is on them. :hugg
I know we have a mom on here who's son had bicoronal-craniomommynbaby- you can send her a PM if she doesn't see this post-
As for Pfeiffer's Syndrome- I've heard it mentioned on the site, though I can't recall which child has it? I'm sure they'll chime in also.
Please continue to ask away- we're here to help eachother!
01-13-2007, 02:43 AM
hi there, your little Shelby looks so cute! It is really good that you have an early diagnosis. My daughter is 19 months and will have surgery next week for sagittal. I have heard of the syndrome you are talking about. Have you tried doing a search for the syndrome in cappskids? Although i too am very scared of the surgery, just try to remember that this is treatable. I'm really glad you found this site and I hope you get the answers you need quickly. all the best! Anna
01-15-2007, 07:46 PM
Hi thank you for your replies and for letting me know about the sleep pattern issues that I will face. Shelby's surgery is being done at Sunset/Hollywood Kaiser with Dr. Henry Kawamoto in charge. I have heard that he is one of the best around. Please keep us in your thoughts for a safe surgery and good recovery. Thanks again and good luck to the many other parents still awaiting surgery for their children.
01-15-2007, 07:54 PM
Do you mind if I add Shelby's surgery date to our calendar?
01-16-2007, 02:14 PM
Hi! My daughter was diagnosed with bicoronal cranio when she was six months old and had surgery at 2 years one month old. She is doing great. The surgery did take 10 hours because she ended up having a lot more ICP than they expected. You can PM me if you have any questions or would like me to send you some before and after pics. I have posted before and after pis of Mikayla on here also. A genetic mutation can not be found in Mikayla's case also. She has had genetic testing done every year for the past 3 years. We have decided not to pursue finding out anything else. I plan on informing her of what I know when she is older and planning a family. I have two daughters that were born after her with no cranio.
01-16-2007, 06:26 PM
My little guy, Simon, was born with bicoronal and had surgery when he was 6 months old. You can read our story at our site found in my siggy line. I was born with just one coronal suture fused and had surgery when I was 2 months old. I welcome any questions that you have.
01-16-2007, 06:34 PM
Welcome Courtney!! She's absolutely adorable!!! We're here if you have any questions at all!!! Feel free to ask away and good thoughts and prayers going towards your little ones surgery! :hugg
01-16-2007, 11:38 PM
Welcome! As the others have said, she will amaze you with how fast she will bounce back. I recommend reading the stories, and looking at post op pictures. I will be honest, one of the hardest parts for me was seeing Dillon right after surgery. Nothing can prepare a parent for seeing their baby after surgery, but seeing other pictures can give you an idea of what to expect.
Dillon did great after his surgery, was smiling and had his personality back within a week. Sleep was a whole nother story though! If you can, have someone stay at your place to help out right after you get home, you will need your rest after the hectic days in the hospital.
Once again, welcome, I'm glad you found us :hugg
01-17-2007, 12:52 PM
Welcome to the site. This is a wonderful place for support.
My daughter just had surgery in October for coronal CS, and did wonderful. She really bounced right back. Her sleeping habits were off for about 2 weeks, but then she was fine.
I think the hardest part is just getting to the surgery. Once they took Miriam out of my hands I knew there was nothing else to be done and it was in my Heavenly Father's hands.
I wish the best of luck, and just know we are here for you.
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