love your video!! my daughter (irene 2 yrs old) will be post-op from her first out of 2 surgeries this Feb 22. I also want to make a video on her journey with craniosynostosis but have no idea where to start or how to even make a video... just browsing and picking up some ideas.
Thank you for posting this, my Grand daughter had surgery a year ago, and also has bacterial meningitis at aged 3 months, she is as bright as a button now - aged 2 and a half.
Her Mummy is an amazing lady, a single parent aged 19 when Maddie was born, and she has coped so weel.
my son suffers from craniosynostosis as well and at birth was mis-diagnosed with 'swelling'. he is undergoing surgery in a week. best wishes to you and your family<3
Thank you for this wonderful vid! I was born in 1991 and was also diagnosed with craniosynostosis. They didn't have the DOC-bands yet back then i believe cause i've never gotten one. tiny screws and small plates shaped my head. Its nice to see that i'm not the only one with a scar from ear to ear. And your daughter turned out absolutely beautiful^^
@Dardasiet I was born the same way. And I was born in 1991. :) I thought I was the only one until I started looking it up. Screws and wires, and bone clay. Yupp I wear my scar proud :). It is good to know I am not alone.
Wow!! Very touching amazing story!! God bless you and your baby girl and family!!! I'm learning about craniofacial reconstruction in college now and I'm coming across remarkable, amazing, truly touching stories!!! God Bless You and your family!!!
My little god daughter is having surgery in 2 weeks time. She has the same type of craniosynostosis as your daughter. The comment where you said you looked it up and saw babies who looked the same is so true. Your video is so reassuring. Thank you for posting it to share your daughters journey. She is a gorgeous little girl.
Thanks for such a great video. I love the way that you have shown your journey and it always amazes me how little some doctors know. I like the fact that you have shown the support groups and that there is life after surgeries. Your daughter is absolutely gorgeous.
You have a very beautiful little girl. I was born with unilateral coronal synostosis. I had to have two surgeries before I was two years old and 3 more when I was in junior high. I'm now 1 semester away from graduating from nursing school with no further problems. Your video is amazing.
love your video!! my daughter (irene 2 yrs old) will be post-op from her first out of 2 surgeries this Feb 22. I also want to make a video on her journey with craniosynostosis but have no idea where to start or how to even make a video... just browsing and picking up some ideas.
god bless your beautiful daughter! :)
cranioangel 1 month ago
@cranioangel one year post-op*
cranioangel 1 month ago
glad that your daughter made it!
imreallyjin 2 months ago
Thank you for posting this, my Grand daughter had surgery a year ago, and also has bacterial meningitis at aged 3 months, she is as bright as a button now - aged 2 and a half.
Her Mummy is an amazing lady, a single parent aged 19 when Maddie was born, and she has coped so weel.
Proud of them both.
Your daughter is beautiful. x
catgail35 3 months ago
my son suffers from craniosynostosis as well and at birth was mis-diagnosed with 'swelling'. he is undergoing surgery in a week. best wishes to you and your family<3
ashnicoleeeex0 11 months ago
Thank you for this wonderful vid! I was born in 1991 and was also diagnosed with craniosynostosis. They didn't have the DOC-bands yet back then i believe cause i've never gotten one. tiny screws and small plates shaped my head. Its nice to see that i'm not the only one with a scar from ear to ear. And your daughter turned out absolutely beautiful^^
Dardasiet 1 year ago
@Dardasiet I was born the same way. And I was born in 1991. :) I thought I was the only one until I started looking it up. Screws and wires, and bone clay. Yupp I wear my scar proud :). It is good to know I am not alone.
God is good. :)
pixychic91 1 year ago
she is absolutly adorable :)
ASDogGeek 1 year ago
She is such a beautiful little girl. My grandson was born Nov. 8th and he has this. He goes to see a Neurosurgeon Jan 4th to see what will be done.
pamnkidz 1 year ago
Wow!! Very touching amazing story!! God bless you and your baby girl and family!!! I'm learning about craniofacial reconstruction in college now and I'm coming across remarkable, amazing, truly touching stories!!! God Bless You and your family!!!
wwwangel28 1 year ago
My little god daughter is having surgery in 2 weeks time. She has the same type of craniosynostosis as your daughter. The comment where you said you looked it up and saw babies who looked the same is so true. Your video is so reassuring. Thank you for posting it to share your daughters journey. She is a gorgeous little girl.
doids32 1 year ago
Thanks for such a great video. I love the way that you have shown your journey and it always amazes me how little some doctors know. I like the fact that you have shown the support groups and that there is life after surgeries. Your daughter is absolutely gorgeous.
jennyw67 1 year ago
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jennyw67 1 year ago
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CranioMommy1 1 year ago
You have a very beautiful little girl. I was born with unilateral coronal synostosis. I had to have two surgeries before I was two years old and 3 more when I was in junior high. I'm now 1 semester away from graduating from nursing school with no further problems. Your video is amazing.
dscbunny 2 years ago