asked to speak on the local news

[a_jessie]

i was just recently asked by our neuro and cranio docs to join them to speak about craniosynostosis and specifically chase's journey on the local news station. i am very anxious to be a part of spreading awareness but i feel like we were just diagnosed a couple of weeks ago and may not say what a parent who has already been through the surgery would. if you have any advice or maybe something specific that you might want to be heard please let me know

[Sophia's_mom]

That's great! As a newly diagnosed family you'll be able to show those raw emotions that go along with this journey. I'm sure you'll do a wonderful job.

[Sawyer's_Mom]

That's is great! Spread as much awareness as you can. I'm sure you'll do wonderful and at least you will get the word out there in your community.

[evergreenmom]

Something that bothers me so much about the cranio journey is how many of us have not had it diagnosed by our pediatricians- but by ourselves! This should not be!!

Pediatricians and Family Docs and OB's and ER staff all need to be more aware of the signs of cranio and they need to diagnose if they see it and they need to listen to parents who are asking why their kids have a different head shape. This is a condition that often does not have symptoms, but a visual clue which is the head bulging or flattening or pointing or lengthening dependent on which suture is closed... it should be a no brainer for medical professionals to be trained in how to spot this condition!! Heck if every doc would just get on this site and look at our kids pics and read our stories they would know more than they seem to be learning in med school!!!

I guess until the medical profession gets in gear we need to raise awareness amongst families of newborns to be watching for signs of cranio!

[Sam's Mom]

:yeahthat

I was lucky that my OB recognized Sam's cranio @ delivery. I was really surprised (from this community) how many kiddos were late diagnoses.

[Momof2Boys]

We were lucky to have a team of NS ready for Justin when he was born. My midwife referred me to a fetal specialist after seeing a shadow on an ultra sound.

But from other stories, when a mommy feels something is not right about their baby's head shape and the pediatrician fail to listen to your concerns, fight for your baby. A mother should always follow her gut and find doctors who will listen.

[BusyBee]

We diagnosed ourselves from the internet - pediatrician in Hospital said she was fine!!!!

[Terry17]

Maybe you can mention this site and reassure people that the babies generally do very well with the surgery. I agree with Evergreen - early detection helps prevent further complications and generally most babies develop normally.

[a_jessie]

Thanks everyone i def will mention about parents sticking with their gut feelings. I know that I questioned chases neonatologist in the hospital and his pediatrician who both assured me that it was just from intrauterine pressure.. It was not picked up until i took chase to the emergency room, luckily he was only 8 weeks

[roetik77]

Our OB and all the hospital staff had NO idea about cranio!!! We had just switched pediatricians and thankfully she diagnosed it at birth. Funny thing though, the 2 days after birth, 2 of her colleges came to the hospital and BOTH looked at Cameron and down played it to just a misshpaed head from delivery. I am SO happy our new pedi caught this!!! She even said I should not look this up online. I refrained for a few weeks and then when I finally did, I found this site and it has made a world of difference. I found Dr. Staffenberg and Dr. Goodrich on here and I have complete faith in them for Cam's surgery next month. I guess just raising awareness is KEY in your interview!! I have found that many health care professionals understand the condition but don't know a "name to it". Just last week I had a dr appt for myself and talked about Cam's cranio. The dr. never heard of it but could totally relate when I explained it to him. I say get the "craniosynostosis" NAME out ther and help to educate the medical profession.

[dannlark]

I would definately get out there how often the parents concerns are brushed off. I too diagnosed our son's metopic cranio from the internet and it was a HUGE fight to have our concerns taken seriously. Especially with parents with other children. We KNOW what looks "not normal". Get the message out that pediatricians and new born hospital staff need to get educated on the signs of cranio. One of the earliest signs is an early closing anterior fontanel. If it's closing too early, then there should be some red flags flying!!!! It's an easy "test" for the ped to preform and should be done regulary with all new borns and infants up to a year old. It's a good indication that there is something that could be a problem going on. That and a WAY to large anterior fontanel. Get the word out there!!!! And while they are at if, why not take the time to FEEL ALL the sutures??!?!!? As a parent that struggled for a proper diagnosis, it still gets my goat when I see other parents in the same aweful path as we walk upon. Dr.'s NEED to listen to the parents!!!

[M.E.'s Gran]

I have been amazed and how many health professionals have never heard of cranio...the general public, I can understand, but a doctor or nurse... :dunno

The only people we have found that knew were people who had a friend or relative that had a baby with cranio....


Great to get awareness out there, especially among the medical community...there has got to be more that can be done.

[AddiesGramma]

Something that bothers me so much about the cranio journey is how many of us have not had it diagnosed by our pediatricians- but by ourselves! This should not be!!

Pediatricians and Family Docs and OB's and ER staff all need to be more aware of the signs of cranio and they need to diagnose if they see it and they need to listen to parents who are asking why their kids have a different head shape. This is a condition that often does not have symptoms, but a visual clue which is the head bulging or flattening or pointing or lengthening dependent on which suture is closed... it should be a no brainer for medical professionals to be trained in how to spot this condition!! Heck if every doc would just get on this site and look at our kids pics and read our stories they would know more than they seem to be learning in med school!!!

I guess until the medical profession gets in gear we need to raise awareness amongst families of newborns to be watching for signs of cranio!
Amen to that ... so happy that Addison's Dr is the one who noticed hers and made the appointment with NS.
Another thing you could point out is the fact that it is not JUST a cosmetic procedure in a lot of cases.

[Monica]

Every little bit helps. You might encourage people to find the right kind of doctors, i.e. a cfs and ns - rather than a ped to do the diagnosis. Talk about how you found out, how you found us. Warn them about misinformation on the internet too. Good luck!

[edensmummy]

hi we live in england and in our town it isnt heard of, eden is the only one as far as i no . we have had the news paper out today getting out story and taking pic , it goin in next wk. il post on here the web add so u can all hav a peep! x jenx