Hello ! Im Erika and I’m 28 and Layla is 15 months old . My pregnancy was what I thought and was told to be normal, come delivery is when we knew just how special Layla was, Layla was born with Myelomeningocele Spina Bifida, L1 and L2, and Chairi II malformation. These were all diagnoses we never heard of, Layla under went meleminegocyle repair at 7 hours old, spent a week in NICU and was moved to a pediatric ICU floor where we stayed for almost a month.
Layla is a beauty inside and out, she is a happy baby who enjoys learning, she loves to read. She does have her moments where she is fussy time to time, but what child isn’t when they’re teething. We enjoy going for walks, reading, going shopping and swimming.
My advice is take each day by day, be grateful for what you have, and know that difference is beauty, and no one can take who you are away from you, you know the person you’ve become hold on to that and don’t let anyone tell you different.
For a parent of Spina Bifida, my advice would be patience and practice is key. Don’t allow doctors to tell you your child can’t, because over time they will, and if they don’t it’s okay too. And that you have a whole community standing behind you, stay strong, and advocate for your child, don’t agree to disagree, be the voice and be heard! You may not know what the future holds for your child, but who does.
Take everyday loving your child because he or she is truly a gift. Goals for Layla would be that she can do anything and everything she can/wants to do. That she lives her life with love, and happiness. That she knows she is worthy, that her disability won’t stand in the way of her dreams, that other see her for who she is not her disability.