The long and short of it/Liam's story

[Liam'smom]

Hello all,

Day one: Liam was born June 20th, 2008 at U of M.

Day two: NS resident comes into room and says he has saggital craniosynostosis. Explains full craniotomy and probable gross blood loss. Mom and Dad fall apart and stay in pieces until we can get CT scan five weeks later.

Five weeks later: CT san and consult with craniofacial team at U of M (Muraszko and Buchman). Ready to hear the run down and carrying two pages of questions. Doc say that sutures are all open and Liam will not ever need surgery. Buchman shows us exercises to correct Liam's torticollis. Husband and I break down in parking garage- too good to be true! Liams head continues to take on a more normal shape, but I will always have concerns. Especially at seeing the CT images myself, a was copy sent home with us. Metopic was more closed than the rest. I start to notice vertical ridge on Liam's forehead.

January 2009: Liam can not get over cold from the holidays, still very stuffy so we go the the pediatrcian. She sees facial asymmetries, sends us back to Buchman.

March 2009: Buchman says asymmetry is due to torticollis and to work harder at exercises. No need to come back to him.

Today: Liam still has ridge running from fontanele to nose. Can feel it and you can see it. Fontanele is still open but growing smaller. I think there is temple pinching and egg shape from bird's eye view. Email, pics and 5 week CT images sent to Dr. Fearon last Wednesday...haven't heard back yet....will I? Am I just shell shocked or do I have cause for concern? Sometimes I feel like the lack of time spent in a doc visit signifies that the doc didn't do a proper eval. Anyone ever feel this way? I'll post pics so others can weigh in....

[Liam'smom]

Geez, sorry for such an informal introduction. I have been on cranio kids since Liam was born but just recently joined. I have better manners than that...really. Hello all, it was nice to finally post and I'm looking forward to getting to know you all. Cranio or not you're here for a reason. Either your child has it, it was feared, or you know somebody who is effect by it. This is a great site! CK rocks....but I wish it didn't have to...


BTW here are those pics. Head-pickers go gonzo!

Remember CT images were from 5 weeks of age. Ridge began to grow sometime after that.

[*jules*]

hi there and welcome. no need for apologies, we all know how emotional cranio or suspected cranio can be. i also wanted to add that i also emailed dr. fearon about alex when we first heard "cranio" and actually JUST had surgery with him on friday. i am writing from the hotel room here in dallas. alex was just discharged this afternoon. we literally walked into the hospital on friday morn at about 5:40am and walked out today (sunday) at around 4pm. dr. fearon usually responds pretty quickly but i know that we all give his email to EVERYONE who posts here with questions, concerns, and uncertanties about their own docs diagnosis...so i am suspecting he is pretty busy. i know he'll get back to you. it seems he usually responds in the evenings and on weekends. the nurses also told us that dr. fearon works 7days a week...not all day, but if he has a patient in there over the weekend/holiday, dr. fearon stops in...doesnt send associates to check on his patients like a lot of docs do. he is great man and know he will get back to you asap with an honest opinion. good luck and please keep us posted on what happens :) hang in there!

[Liam'smom]

Thanks Julie! I saw your post earlier about your discharge...CONGRATULATIONS! I can imagine the weight that has been lifted and I can also imagine not wanting to acknowledge it--recovery still ahead. I was shocked to learn that Alex's stay was so short. Upon researching this whole thing, I thought hosp. stay were usually around 5 days. Which procedure/surgery did Alex have?

[Liam'smom]

Wouldn't you know it. As soon as I logged off of CK, I checked my email..and Dr. Fearon replied..

"Dear Theresa:

From what I can see, Liam looks pretty normal to me. I can see the areas of concern to you, but I have seen this on other children and I believe that it is a variation of normal. Just as no two people seem to have the same face, all kids have slightly different shaped skulls. At least from what you showed me, I do not see any evidence for craniosynostosis. I hope this reassures you."

THIS is a wonderful doctor...and I've never met the man!

[Shar]

Theresa, hello and welcome! That is wonderful news from Dr. Fearon!!! If your son does have a ridge, maybe you will stick around and hang out with us for a while. There are always new parents coming on asking about metopic ridges.

Well, I bet you are celebrating right about now!!!

[Monica]

Welcome to CK. Glad you finally officially joined. There seems to be a whole separate club for the metopics who don't need surgery and I hope you will be part of their group. Congratulations on the good news for your son. He is a cutie patootie by the way!!

[*Jessica*]

Fantastic news! Liam is a cutie!

[Zara's mum]

That's great news

[Debbied]

Hi,

Looking at your CT scan his softspot still looks pretty open and the metopic suture even ooks slightly open still to me although I am no doctor..It may be starting to fuse but your son is almost 1 year old right?? If so that is within what they consider to be a normal timeframe from my understanding..Your sons headshape looks a little like my sons. My son is 7.5 mos. old now. We noticed the ridge in his forehead at about 4.5 mos. We saw a craniofacial doctor who said he looked good and were told to come back in June. We have not had a CT scan done yet but his soft spot is almost closed from what I can feel and I think his suture is closed also from what I can feel. I am glad you got a good response back from Dr. Fearon, I personally would take comfort from that but watch your son's development and head growth and follow your instincts!

Best to you,
Debbie