Q: What is your SB warrior’s name?
Q: What type of SB does she have?
A: Myelomeningocele (no hydrocephalus)
Q:Where do you live?
A: California (Bay area)
Q: How can we continue to follow your story?
A: Instagram @erica_eliannie
My Husband and I live in California (bay area). We have a precious little girl named Eliannie. She was born in September 2018:) at 38 weeks gestation via c-section (my water broke before our schedule c-section). We opted out from fetal surgery… our Drs recommended not to and our religious beliefs reassured us we didn’t need it. We found out she had SB very early on pregnancy around 13 weeks. In my second trimester we also found out she had clubbed feet and a small hole in her heart that closed a couple of weeks after birth. When she was born she had surgery to close and repair her mylo. We both stayed in the hospital for a month and recovered . I lost a lot of blood during my c-section and a blood clot traveled from my leg to my lung ( pulmonary embolism). I had two blood transfusions and was on blood thinner for 3 months to remove the blood clot. Meanwhile, Eliannie recovered very well and was discharged after a month in the hospital. She didn’t need a shunt or a catheter but needed months of serial casting to improve her clubbed feet. She also had both her achilles tendons cut to release her ankles and allow her feet to go flat. Now she uses AFOs to help her stand and we take them off when she crawls because the easily come off…. Fast forward to now she had many UTIS and we started to cath her, she doesn’t have sensation from her knees down and isn’t walking yet. We started using a gate trainer and we are still deciding what type of equipment will work best for her when she starts to walk. Eliannie is a very strong girl and we still have a lot to fight. We will fight through the rough times and hope for the brightest future ahead.
It sounds like Eliannie has an amazing support system that will help to provide her with a bright future and extremely positive outlook. I can’t wait to watch this amazing little fighter grow!