Savannah Tucker: Overcoming a Skull Deformity

Savannah Tucker and her family spent a lot of time at the University of Virginia. Savannah was born with Craniosynostosis, a cranial deformity. She saw a multi-disciplinary team of doctors stretching over her 18 years of life.
- I knew something was wrong. And even asked, is there something wrong with my baby?
She needed plastic surgeons and she needed neurosurgeons, and there was nowhere in West Virginia that offered all of that. And so we were told she would be flown out to the University of Virginia.
I guess I can't even really explain it. It just felt right, just felt like I was at the right place.
- I got to know Savannah at an extremely young age. She was born with a deformity that was potentially threatening to her life, as well as her future development.
- Each team came and talked to us, and we knew-- we were realistic. We knew what we were up against. We knew if she didn't have the surgery, she wasn't going to survive. But it was risky. But we were ready.
- You have to tell the truth and say it's a serious situation. But not making the truth seem so frightening that they are discouraged. There is hope and obviously, there was hope. The years have proven that to be true.
- I just remember-- oh, I mean, good memories like nurses. They had all these patients, but when they saw that one patient, when they saw me, it was like I was their only priority. They treated me as though I didn't look as bad as I know I did. They really cared and it's everybody at UVA. It's not just the nurses, just the doctors. Not just the team. It's everybody.
- I was reading this chart and thinking, I'm not sure they have the right expectations. And it wasn't clear to me that walking was a realistic goal.
- You take a doctor that is unfamiliar with Savannah, and he reads her medical records before he comes in and he will actually not know that that's her. And he'll say, you're Savannah? Because she projects herself, and it's just amazing.
- I realized just how incredibly motivated she was. But more importantly, she came from a nurturing environment and had parents that were totally supportive and extremely intelligent, and understood what it was going to take for her to get better.
- She surprised us with crutch walking, which we did not know would we ever see that. And so she walked her entire graduation with her crutches. It was my ugly cry moment, I call it.
- I wasn't sure about being in the marching band. I wanted to, but I didn't know about the pushing and all that with my chair. And so Daddy called the director, and she was like, oh, yeah, yeah. I'm in the concert band, too. So I love every part of it. I mean, music is my passion.
- The whole Tucker family is just a remarkable story. It's sometimes hard to convey how serious these deformities are. I mean, there was a point where Savannah almost died. It's remarkable how they've been able to raise her and allow her to be the person that she has become.
- I'm a God fearing woman and you take what you're given and you realize that you can either be a miserable soul or you can be someone who really blesses people.

[@tudormiller887]

I'm an adult with craniosynostoesis, i never had an operation or treatment for it as a toddler. So now, my face is asymetrical, because of it. And i'm not living my 'best life' 😢

[@savagesfortruth]

Me to I been living with a flat head since birth going on 32 years went to a New Mexico craniologist for treatment the doctor didnt bother to do a physical examination of my skull he would have notice my skull was deformed my sides of my skull on my forehead was protruding out and the nerves in my brain were so entrapped they become tangled causing constant swelling and pain and blood pressure problems in my spine down my legs and living with it is uncomfortable but being ignored by a specialist doctor is far worse not only was I not treated I was dismissed

[@tudormiller887]

@@savagesfortruth Awful treatment by the medical professional. How about daily life ? With your family, friends, partner, work buddies & total strangers ? How do interactions with them impact on your mental health ?

[@jezuser]

Much love for this parent ❤

[@heatherfamularo3440]

Comments?

[@weirddeer8032]

Yes hello