Q: Where do you live?
A: Miami, FL
Q: How old is Elena?
A: She is 14 months old
Q: What type of Spina Bifida does Elena have?
A: Lipomyleomeningecele
Q: How can we continue to follow Elena’s story?
A: Follow her on IG @efernandes1215
Elena was born at 41 weeks. My pregnancy with her had no complications, but at birth they did notice a skin tag on her lumbar region. Her second day of life, they took her for an ultrasound where we immediately knew something was found just by the look on the radiologist’s face. That moment, I knew Elena’s diagnosis involved a form of Spina Bifida- but I had no idea the details that came with this. Day 3 we spoke to a neurosurgeon who suspected Lipomyleomeningecele. After 6 months of waiting, Lipomyleomeningecele was confirmed. Lipomyleomeningecele is not your typical form of Spina Bifida. It is estimated that 1 in 10,000 live births will have this form, much less common than Myleomeningecele which is estimated 1 in 1,000 births. There is no connection to folic acid with Elena’s form, simply that some cells didn’t make it to where they should have gone in the first month of pregnancy. With Lipomyleomeningecele, the baby’s back is not open, rather fat has formed around the spinal cord and is holding the cord in place rather than free falling. Without corrective surgery, which has risks, the infant would most likely have lower limb motor movement damage and bladder and bowel damage.
We waited past our 6 months MRI for her predicted surgery date at 1 year old. I would be lying if I said that the wait was full of strength and courage. There were days where I felt like mom of the year, but there were also days where I struggled to keep my faith. There were days where I questioned “why us?”, but there were also days where I felt proud that God trusted us with this little warrior! I remember the day we found out, crying on the hospital floor, thinking that each hope and dream I had for Elena would never be possible. People, doctors, nurses tried to comfort me, but until someone could remove this diagnosis- I found no comfort.
But, boy was I wrong! As the months past, the comfort set in. This little girl went to more doctors appointments than probably most adults in a lifetime, but she did so with such joy, love and appreciation! Each day we fell more and more in love with her, and each day God’s miracles continued to flourish!
At 11 months Elena had surgery and God continued to protect her. He has not let us down once, and I am thankful for how we have grown through this experience, the people we have met, and mostly for our beautiful daughter who is a true miracle! What I’ve learned? I’ve learned to see the perfection in what most people would lable as imperfection. I’ve learned that God’s work comes in all forms. I’ve learned to see the beauty in people, even complete strangers through the Love they have for Elena and her story. And I’ve learned, through one hell of a year, that it will all be okay. The joy will outweigh the obstacles and the journey will be one of strength, love and growth! God is good!
I loved how Elena's mom says she has learned to see the perfection in what some people would call imperfection. Also, Shehas learned that it will all be OK! Those are such powerful words. I mean WOW! I think we could all learn from these simple things no matter what we are going through. You have to take it one day at a time and know that it will all be OK, in fact it is perfect just the way it is! We want to share Elena's story to provide more comfort to those parents that may feel like there is no hope. Just wait......havefaith!
Spina-Beautiful 