Momof5

[Jennifer]

Just wanted to say ! I hope we can be of help. Would love to hear your story when you get a chance.

[momof5]

Thanks so much. I just returned to work from maternity leave and was so happy to find this forum from a google search. My 4-month old daughter Talya has unilateral coronal synostosis and her surgery is scheduled for October. When I met with her n/s after being told by 2 pediatricians that were just overly worried parents and her head would straighten out by itself, I felt like all the air had been sucked out of the room. She's my fifth child and other than the occasional strep throat, I rarely enter a doctor's office with them. It's all I think about and I am so sad and disappointed that instead of enjoying my baby, every moment is filled with worries for her future.

I have a million questions and concerns, foremost among them whether the surgical team we've chosen at NYU is good, and whether there are other doctors who are at the top of the field we should consult with to get a second opinion. They seem pretty certain, even without any testing, that she must have this surgery. Did you seek a second opinion with Emily? How did you choose your doctor?

Looking forward to hearing from you,
Momof5

[Jennifer]

With Emily our pediatrician unofficially thought she had coronal cranio. She had her do X-rays, the tech beleived it was fused, so the pedi called us that day to set up an appoinmtent w/ the NS. Once we finally met with the NS- she called it right off w/o seeing the X-rays. There was not a doubt in her mind. We scheduled the surgery and scheduled a CT to be done sometime before the surgery. After we left that appointment, we were in a bit of shock, then we decided to get a 2nd opinion- we didn't doubt the diagnosis, just wanted to make sure we were with the right team for our daughter. We went to the 2nd opinion, and upon leaving the office, we knew that the 1st NS was the right choice for us-- our comfort level and what others told us is what really made our choice.

I can't help w/ the team you've chosen as I'm on the opposite coast as you, but I believe there are moms in the New York area. If you have any doubts, meet w/ another team, your gut will tell you alot.

Your comment about never going to the doctor except for the occasional strep throat sounds just like me. Emily is the youngest of 3- prior to her, besides well baby/yearly check-ups, I had never been to another doctor appointment with any of them......then our life turned into one appointment after another for a few months.....quite a change!

Please try to enjoy her, you will constantly stress about the surgery until it is over, but once all the appointments are set, try to put the surgery in the back of your mind (I say this as I am past the surgery, not an easy thing to do befor surgery!) What your daughter has is treatable. She will be fine.

Most of our story you can read at http://www.craniokids.org/support/showthread.php?t=944.... It's under 'our stories'.

Please ask all the questions you want, we are hear to help. When you are ready, if you'd like to see more pictures of before/after surgery, please feel free to send me a PM and I can email some of Emily's to you.

[mom2mykidos3]

I know there are moms here from NYC. I think it is Matthewsmommy. I understand the concern of wanting to find the best doctor. Our PS did diagnose Miriam with left coronal CS before she had a CT scan. In fact, we didnn't have the scan until almost right before her surgery. As you look at other children that have CS you will be able to tell too that your child has CS. These babies look the same, especially coronals.
I wish you the best with finding the answers you need. Just know that we have all felt the way you do, and if you have any questions then just ask.