×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Levi with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

My 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!)

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.

Feed

Charissa Howe posted a new journal entry, "Levi's New Guardian at School".

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. ... Read more

Janet McKenney signed Levi's Guestbook.

He has really grown.  We enjoyed our time with him and his cousins at the zoo in October when we had our grandson down for a visit.  The boys and your daughter got along ... Read more

Charissa Howe posted a new journal entry, "Levi's New Guardian at School".

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. ... Read more

Charissa Howe posted a new journal entry, "Levi goes to school".

I know I haven't updated in a very long time because health-wise, Levi is a perfectly normal, even robust three year old boy now.  But in case anyone happens to still be ... Read more

Charissa Howe posted a new journal entry.

So I have never watched Grey's Anatomy before, but a few friends tipped me off last night that there was a pregnancy on the show with ABS.  The link to watch it is here: ... Read more

margaret schlegel signed Levi's Guestbook.

I am so happy that Levi is doing so well.  I will continue to pray for all of you.  You  are special people to be given such a gift as Levi, most would not be so ... Read more

Charissa Howe posted a new journal entry.

It's been a long time since we've updated here.  Things have been quiet, medically speaking.  Levi's now a year old and pretty much caught up for his age, ... Read more

Deanna Golden signed Levi's Guestbook.

Happy 1st Birthday Levi!!! We are so blessed to have be a part of your amazing life! ~Deanna Golden~ (Hi Charissa, all the girls on the BabyZone Nov BDC left Levi lots ... Read more

Show more recent activity