This blog was started as a way for me to record our, my daughter Adelle and our family's, journey with Amniotic Band Syndrome that presented itself on the head of our sweet daughter, the very premature of our sweet baby. Actually, she had twin sister, Bella who is normal, not ABS. Adelle was born missing her fingers on her right hand and left foot due to Amniotic Band Syndrome. But still, she is good healthy and still in the NICU for 4-6 weeks til she get better then bring her (with her sister too) to home, cannot wait to have them in our family's life!
My name is Adelle. I had twin sister, Bella which don't have one as Amniotic Band Syndrome like me, I had Amniotic Band Syndrome affecting both of my hands and left foot and causing me to be a very little preemie (mommy at 32 weeks before due by august 5th!)
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 left foot 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.
Mommy's water broke in the morning like 6am and went to labor at Mercy hospital. Bella and I were born June 10th at 2:43pm and 2:52pm. I was 7 weeks early. I was 4lb, 10oz when I was born, which is a good weight for someone as young as me! Have to wait in 4-6 weeks in the Intensive Care Nursery at Mercy Hospital.
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.
About Amniotic Band Syndrome Amniotic Band Syndrome (ABS) is a condition in which, for some unknown reason, a rupture occurs in the amniotic sac (i.e. the container of the baby and the amniotic fluid) where fibrous frays (bands) from the rupture entangle the baby and cause damage to the limbs and/or other parts of the body.
Other names for Amniotic Band Syndrome:
Amniotic Rupture Sequence
Amniotic Band Sequence
Below is a list of sites we found useful in learning more about ABS.
A website with a community of people affected by ABS