While we are expecting a busy two weeks of paperwork, I wanted to take some time and tell you a little about Gracie.
Gracie is from Zhenjiang, Jiangsu, which is a few hours west of Shanghai. Her birthdate is June 10, 2014, which makes her 1 year and 7 months old. She weighs 18 pounds and is 29 inches tall…itty bitty! The orphanage said she can say a few words and can walk without support. From the video and pictures we have received we can tell she is feisty and full of joy. She is described as a deep sleeper, has a ready smile, quick in reaction, can pick up little objects with her hands and likes to bang blocks together. And she can do this already with multiple missing fingers.
Gracie has Amniotic Banding Syndrome, also known as ABS.
“ABS occurs when the fetus becomes entangled in string-like amniotic bands in the womb, restricting blood flow and affecting development. ABS can cause a number of different birth defects depending on which body parts are affected. If a band wraps tightly around a limb, the limb can actually be amputated in the womb. The baby may be born missing fingers, toes, part of an arm or leg. ABS occurs randomly. It’s not genetic, nor is it caused by anything a woman did or didn’t do during her pregnancy. (from amnioticbandsyndrome.com)
Gracie has deformities of all of her fingers (except her thumbs) and 2 of her toes. She also has an amniotic band around her leg. On both hands she is missing the top two bones on most of her fingers. The only full fingers she has are her 2 thumbs. We were able to speak with a renowned pediatric hand surgeon (Dr. Chris) in Dallas, TX who told us,
“she appears to have two fantastic thumbs. Having thumbs is golden! This represents at least 40% of the total function of the hand in and of itself. With that, she has more than one finger on each hand that seems to function quit well. They might be short, but they provide a post for the thumbs to pinch against giving her tip-to-tip pinch, key pinch, and the ability of large object grasp. In short, I think her hands will function quite well. They may look a little different but their function will be incredibly high. That said, I do feel she would likely benefit from some surgery to separate the skin between a few of the fingers and recontour the bulbous ends of a few of the fingers to make the hands both more functional and aesthetically pleasing.”
Gracie is from Zhenjiang, Jiangsu, which is a few hours west of Shanghai. Her birthdate is June 10, 2014, which makes her 1 year and 7 months old. She weighs 18 pounds and is 29 inches tall…itty bitty! The orphanage said she can say a few words and can walk without support. From the video and pictures we have received we can tell she is feisty and full of joy. She is described as a deep sleeper, has a ready smile, quick in reaction, can pick up little objects with her hands and likes to bang blocks together. And she can do this already with multiple missing fingers.
Gracie has Amniotic Banding Syndrome, also known as ABS.
“ABS occurs when the fetus becomes entangled in string-like amniotic bands in the womb, restricting blood flow and affecting development. ABS can cause a number of different birth defects depending on which body parts are affected. If a band wraps tightly around a limb, the limb can actually be amputated in the womb. The baby may be born missing fingers, toes, part of an arm or leg. ABS occurs randomly. It’s not genetic, nor is it caused by anything a woman did or didn’t do during her pregnancy. (from amnioticbandsyndrome.com)
Gracie has deformities of all of her fingers (except her thumbs) and 2 of her toes. She also has an amniotic band around her leg. On both hands she is missing the top two bones on most of her fingers. The only full fingers she has are her 2 thumbs. We were able to speak with a renowned pediatric hand surgeon (Dr. Chris) in Dallas, TX who told us,
“she appears to have two fantastic thumbs. Having thumbs is golden! This represents at least 40% of the total function of the hand in and of itself. With that, she has more than one finger on each hand that seems to function quit well. They might be short, but they provide a post for the thumbs to pinch against giving her tip-to-tip pinch, key pinch, and the ability of large object grasp. In short, I think her hands will function quite well. They may look a little different but their function will be incredibly high. That said, I do feel she would likely benefit from some surgery to separate the skin between a few of the fingers and recontour the bulbous ends of a few of the fingers to make the hands both more functional and aesthetically pleasing.”
The doctors we spoke with believe she will have no problem adapting and learning how to use her hands and we will be referred to a pediatric orthopedic hand surgeon as well as a local physical therapist to work with her to ensure she has full use of her hands. I have spoken with several other moms whose children have similar hands and they told me their children were able to tie their shoes/thread a needle by 5 years old! I “might” have one or two kids in this house who couldn’t tie their shoes at that age with all 10 of their fingers.
Because of the ABS, some of her finger “nubs” are webbed together, which as mentioned, will be separated with surgery. Her two little toes that are webbed are actually similar to Jonathan’s (as you know, his webbed toes don’t slow him down a bit!). Our bigger concern is the band around her leg, which by the video, has not affected her ability to walk in any way. Please pray with us that this band will be able to be released with surgery to allow her leg to grow as a fully functioning leg.
We are sharing this because obviously Gracie has a visible physical difference. It is not a “special need” that can be hidden for privacy. And honestly, I don’t completely agree with her being labeled as “special need”. Gracie will be able to function just fine. Her greatest need is love. And yes, she is special. The reason Gracie will have a “special need” is because of other people. This upsets me when I think about the biggest struggle Gracie will probably have will be from other people’s reaction to her hands. And this is where God is growing me…growing me in grace. Now that I know she is our little girl, the emotions are stronger and the fear and worry creep in. Am I nervous? Yes. Am I scared? Of course. Then the Lord reminds me of my favorite verse..."Be still and know that I am God." Psalm 46:10.
Gracie is a precious little girl and we hope you can see her for who she is, not for what she doesn’t have. Really, that’s how we should look at everyone….through the eyes of Jesus. She just has different looking fingers and toes…that’s it. We want her to know she is fearfully and wonderfully made just how she is and her identity is in Christ. She has His hands and feet.
Psalm 139:13-14 "For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."
Thank you Lord for your gift of Gracie.