Craniosynostosis | Fitz’s Story

[@jennakrehbiel3562]

My Theodore is 3 months old and we are gearing up for surgery in a few weeks. I've been really emotional about it. This was really helpful

[@jennakrehbiel3562]

@Judy they pushed us back to April 6th😔 he will be days shy of 6 months old. Very frustrating. I hope you get everything over with asap and can be on the other side of surgery soon!

[@serpany2044]

I was born with it I’m 14 now and perfectly healthy, although I have a massive head scar. How is ur baby doing now?

[@jennakrehbiel3562]

@@serpany2044 he is doing very well! He is a happy and healthy 8 month old baby!

[@emily_ane1194]

@@jennakrehbiel3562hi there. I also have a 3 month old and we just found out that his soft spot is closed. I’m so nervous. How’s your son doing after the surgery? How was the process?

[@24get24give]

I know how you feel, I waited five months for my son's surgery' I know it's hard to believe, but he'll be fine before you know it

[@janellevillanueva6203]

Your story makes me emotional!! Bless you and your family i hope your baby grows big and strong. My son might either have plagiocephaly or craniosynostosis I'm praying whatever he has that he will be okay and grow to be a strong boy he'll be 7 months on the 10th of this month! 💕❤

[@misatoholic]

janelle Villanueva I had that

[@crujones4046]

My son was born with sagittal Craniosynostosis. It was rough at first especially not knowing what we were in for. He’s three now and doing great. Just remember parents this is fixable and it gets better.

[@floragjinovci3759]

Did he had fluids (liquid) in his head after surgery? Im worried for my nephew because he had the same surgery and they noticed liquids in his head!

[@crujones4046]

Flora Gj- no I never noticed anything like that. My son had the endoscopic surgery. And we were constantly in and out of the hospital getting him checked. If there is something wrong I’m sure they’ll catch it. Don’t worry 😉 Have a good day.

[@floragjinovci3759]

@@crujones4046 Thank you for your response! I'm calm right now because the doctors said that's normal and that he is doing very well 😊.

[@crujones4046]

Flora Gj- no prob. I was a mess when we got the diagnosis. Till I started doing some research “googling and KZbin” I realized this was fixable and he was going to live a normal healthy life. And I hope I can make at least one family going through this feel at ease.

[@Adi-wx2xn]

@@crujones4046 Hey, I was born with sagittal Craniosyntosis but I didn't get a surgery when I was a child and now I am a teenager. What are the others symptoms that I could have? The doctor said that I don't got nothing and it's just my skull but now it's very long and narrow. Please respond and sorry for my bad grammar.

[@serpany2044]

I was born without a soft spot I have had a huge scar going across my head my whole life becides that I’m 14 now with no other health issues for parents with children with this issue I hope you’re children live through it i was 6 months old when I went into my surgery and live a normal life today the scar on my head all though I hate having one makes me who I am today

[@westonadams7135]

Mine is right down the middle 5 or so inches long.. If parting your hair in the middle was still a hair style, I'd have the perfect part! It is going to suck when I start balding and have to shave my head. Mine was done in the late 80s so my head isn't in the greatest shape..

[@mackmadrid]

Me too, I’m 12 nd I got this big scar on my head I cover it w my fluffy hair lowk scared for when I start balding nd I got the scar

[@savagesfortruth]

I feel you I have cranial deformities I am now 33 years old I was supposed to have a decompression surgery in the back of my skull near my brain stem but that never happened so I developed seziure due to spinal fluid problem

[@adamhynes296]

I had a bad case of this when I was little. The surgery took 10 hours! I'm fine now though

[@mackmadrid]

Me toooo

[@ITShine420]

Medical name price

[@2degucitas]

I love these helmets. They push and mold the head while it's new and soft.

[@zdenawilson7277]

Such a gorgeous child ❤

[@24get24give]

he really is, and so happy! you are very lucky all things considered, this was a very nice thing for you to do, I am sure it will help parents facing the same thing with their babies

[@mcbrolax1771]

An amazing Story, though allergy season is coming way too early for me.

[@misatoholic]

I have it to well i had

[@swatiutkur]

This made me emotional! How’s he doing now? Is it treatable

[@mackmadrid]

It is, the surgery has a 99 percent success rate

[@shadrach6299]

What a cute baby!

[@mangopie3542]

Can neurosurgeons do research like this along side their career and how much time could they spend on their research and does the research neurosurgeons do have to be neurological based or could they be for example gene editing and cancer and epidermis molysis bullosa

[@philhobrla8489]

There are variable levels of - and funding for - research, with “physician-scientists” (MD/PhD) being what I think you are referring to.

[@mangopie3542]

@@philhobrla8489 yes you answered my question, thank you

[@mackmadrid]

Yooo I had this too I got surgery and now I have a big scar going across my whole head from the surgery

[@rewa9236]

My 30w fetus diagnosed dolicephelic head I am so worried about his mental health . Is there any chances of mental abnormalities.please reply

[@JohnsHopkinsMedicine]

Hi, thank you for reaching out to us. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.

[@radhakrishna.daasi...]

Meri beti ki v surgery hui h nd mujhe uske liye cranial helmet chahiye jo india m available ni h

[@tasavvurhusain7366]

Kaha se surgery karayi hai aapne. Please bata de. Kya me aapse Baat kar sakta hu. Muje bhi surgery karani hai baby ki. Mera no. 09717712456 hai. Pls help.

[@sarahsiddiqui4317]

Krishna Soni aap ne surgery Kahan se krwayi hai please batain

[@tarun3138]

@@tasavvurhusain7366ty sir

[@opod892]

I have carnosytosis but my parents and doctors in my country didn't know this disease and I am still 18+ what I should do?????

[@david1399]

Same bro i think i have it. I wana talk to u as I never met another pers with it. Can u message me back

[@opod892]

Yah bro

[@antonioblagaj4285]

@@opod892 I have a 2-month-old son, he was diagnosed with sagittal craniostenosis, the doctor says that if the head circumference grows normally, there is no need for surgery, but my son's head has an elongated appearance, I wonder if we can hear each other somewhere, like Facebook or Instagram to share experiences?

[@opod892]

@@antonioblagaj4285 yes ofcourse

[@jebanaveen5380]

​@@antonioblagaj4285How is your child now?

[@misatoholic]

YAY! I HAVE THAT TO BTW!

[@chaseelliotiscool2849]

Same

[@mackmadrid]

Same

[@nelsonleon6874]

So fking sad my parents didn't do this to me know I'm 32 and my is back back is too long and everyone looking a me ... and I can't fix my head know. So parents take actions don't wait.

[@lesego2933]

Same

[@philmstud2k]

No hope for a solution for adults who have this now who never had it corrected, huh?

[@2degucitas]

I don't see why not. The surgery would be in several stages.

[@Stormmud]

Man don’t let them open your head and cut your skull. This isn’t normal. The moment they open things up your gonna have an array of more problems.

[@scottcarey5573]

No seriously... it's just allergies. My eyes always get watery in the spring. :)

[@misatoholic]

just because you think it's busy season does it mean if your pregnant your child will have this know it's a gene or sometimes I can be aging but sometimes it's not it's really unknown and I have it too so I mean I had it I had surgery obviously

[@pennym6576]

❤️❤️

[@ivaniaflores6630]

Interesante

[@isma9711]

😍😍😢

[@chipirox]

dream be like

[@papagrande7448]

Tryna see what that weird baby woman on tik tok has.

[@rubymargaritais5657]

Papa Grande wow lol.

[@deb310red]

What happens to people who were not diagnosed and treated in childhood?

[@blouise16]

deb310red depending on severity, some can grow out of it and some can get swelling on their brain. Since the sutures are closed early it’s pretty easy to tell, unfortunately the more visible on the outside, the more severe it is typically

[@PlayerofNoobishness]

It could cause blindness or developmental issues. Otherwise, the skull just looks odd and I'm sure kids make fun and/or stare.

[@ratedr7845]

@Basse nope, your head is hardened

[@sofiaharper6349]

@@PlayerofNoobishness This finally makes so much sense.. I always wondered why I got bullied so bad. It finally makes sense why I look so different than others..

[@kekecozyASMR]

​@@blouise16mine is severe and as far as I can tell my intellect and abilities weren't affected. Before I learned about the condition, I was well-adjusted, got above average grades, had normal friends, and excelled at track & field. I'm also gifted at art and see life from a creative perspective. My biggest handicap has been the emotional distress I developed after learning about the condition. I began recognizing how I'm different and observed the ways people have treated me differently throughout my life. This caused me to isolate myself from my friends and make poor decisions. It's horrible and I wish no child ever experienced this. Sadly our stories are always similar.