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!)
If you'd like to make a tribute donation to the Fetal Care Center at Cincinnati Children's Hospital or to the Allegheny General Hospital Intensive Care Nursery, please check out my full story.
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 stying 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.
If you'd like to make a tribute donation to the Fetal Care Center at Cincinnati Children's Hospital, please go to http://www.cincinnatichildrens.org/give/ways/annual/default.htm. When you fill out the donation form, please specify that you'd like the donation to go to the Fetal Care Center. Mommy and Daddy are asking that instead of baby gifts (I'm baby #3, so we don't need anything), people donate to the center in tribute to me. These are the guys that saved my life and my hand! They are doing ground breaking research to save babies' lives.
Another great place to make a donation in Levi's honor (remember, no gifts, please) is to the Allegheny General Hospital Intensive Care Nursery (http://www.wpahs.org/womenshealth/clinical/services/neonatal.html). They are taking such wonderful care of our little guy, and of us.
I know there are alot of knitters and crocheters out there reading this, if you want to make preemie hats, get in touch with me on my knitting website (http://www.howe2knit.blogspot.com) and we'll work out a way for you to get hats to me to deliver while I'm there. Another physical donation would be yarn and/or needles/hooks for the antepartum wing. An awesome RN/knitter/fellow ACAC Bible Study mom started collecting yarn to teach women who are stuck in the hospital while pregnant (like I was) to knit or crochet. I can also drop off those donations.
For those of you who are still hanging around here getting notifications, I wanted to share a really cool experience that Levi and I had at his preschool the other day. If you haven't started following my regular blog yet and would like to see what we're up to a little more regularly, go over and check it out. Here's the link to the entry over there from today that I think is relevant here too. There is one awesome little girl at Levi's school. I haven't met her parents yet, but I think she had ABS too! Those are some incredible odds!