Savera's Spina Bifida diagnosis

Hi, as many of our friends and family know Savera was diagnosed with Spina Bifida at 20 weeks gestation. They told me at my routine ultrasound appointment, and they referred me to a specialist at Spectrum Health in Grand Rapids for further testing. Baby girl has a pretty decent size lesion on her spine L4-L5 area, to which those nerves were already affected and damaged. I did not know exactly what this could mean but i knew it would mean somewhat paralysis. I opted to have a surgery at Yale New Haven called "Open- In Utero" surgery, meaning they would make an incision on my stomach, open my uterus and take her out. Connecticut is the 12th state to ever offer this surgery, so i moved to live with my mom 23 weeks pregnant. 2 weeks later i signed all the waivers and documents making the surgery official. March 20 of 2020 is a date i will never forget.. heightened covid time. 21 people, nurses, doctors, anesthesiologists all in the operating room. Dr Batiyar stitched up her back, exposing her spine to close off any more damage being done to her nerves, which affected her lower extremities (walking, bathroom use, ect) and put her back in my stomach to carry another 10 weeks. I was told she would most likely need to wear AFO braces to help walk and lots of assistance with walking (if she would ever walk)

Fast forward 3 wonderful years later, she was diagnosed with club feet, wears AFO's, we are in weekly physical therapy and annual MRI's to check her brain and spine function (also checking for any fluid buildup/hydrocephalus).

Savera is the strongest person i know, every doctor appointment, every physical therapy session & teachers at school say she is doing exceptional, and her transformation is a miracle! All with a smile on her face.

I created a go fund me page to help with those extra medical expense's insurance doesnt cover. She is going to need a wheelchair for her later school years and i would love to have her join special needs camps with other kiddos just like her. Thank you for taking the time to read our story. Savera has other stories written about her as well, just google her name and youll find it :)