Levi's Story

My name is Charissa.  My son was born this summer affected by amniotic band syndrome.  We were one of the few families who received an in utero diagnosis early enough in the pregnancy that we were candidates for fetal surgery to release the bands.  The umbilical cord and both of Levi's hands were affected by the bands, but the amazing doctors at Cincinnati Children's Hospital Fetal Care Center were able to save both his life and his hand.  As a result of the ABS, Levi was born three months premature, but he is showing no signs of lasting effects from the prematurity.  He is missing a few finger tips and has deep scarring where a band threatened to amputate his left hand, but is otherwise, miraculously, unharmed from the ABS. 

Our family believes that one of the many wonderful reasons God blessed us with Levi is because we are to get involved in helping raise awareness of fetal conditions like ABS and to help other families suffering the trauma we went through. 

Levi's Story

My name is Levi. I have Amniotic Band Syndrome affecting both of my hands and causing me to be a very little preemie (3 months early!)

I have a rare disorder called 'Amniotic Band Syndrome.' That means that at some time between 28 days and 18 weeks of gestation, a portion of the inner layer of the amniotic sac holding me in ruptures and formed fibrous membranes. These membranes got tangled up on my hands and were causing trouble with my umbilical cord. This could cause all sorts of problems, including constriction of the umbilical cord (which would cut off my blood and nutrient supply) and amputation of my left hand.

The awesome surgeons at the Fetal Care Center at Cincinnati Children's hospital were able to operate on me while I was still in Mommy's tummy and save my hand and my life! Because of the already damaged membranes and the invasive surgery while I was still inside Mommy, I was born August 17th at 8:44pm. I was 12 weeks early. I was 2lb, 10oz when I was born, which is a good weight for someone as young as me! After 7 weeks in the Intensive Care Nursery at Allegheny General Hospital, I got to finally come home, weighing in at 4 lb, 8oz.

Because of the surgery I had before I was born, it looks like the log term damage to my hands is minimal, and the part Mommy and Daddy are happiest about is that they were able to find doctors who saved my life. I still have a long road ahead of me, but I'm staying one step ahead of my doctors and thriving for a baby so small.

I'm hoping that I'll be able to be an inspirational story to give hope for other kids with ABS. And Mommy says we're going to work together to help raise awareness for this syndrome.