Joey was born with amniotic banding, including a wide bilateral cleft, a band around his left wrist, missing toes and hemangioma. Here he is at age 9 - a normal, healthy boy.
(more pictures of Joey at the bottom)
Joey's Story - what a kid!!
by Joanne Green
Joey was born with amniotic banding, including a wide bilateral cleft, a
band around his left wrist, missing toes and hemangioma. Here he is at age 9 - a normal,
healthy boy.
(more pictures of Joey at the bottom)
~~~~~~~~~~~~~~~~~
Joey was born in Korea. His parents were farmers in the Chong Ju Province. They had anticipated the birth of this - their first child. And, like most Korean couples - they prayed for a boy. And they had a fine, healthy boy. But this child had a number of disturbing birth defects, and the couple was very saddened over the prospects of this child's future.
The most obvious birth defect was a very severe, very wide bilateral cleft lip and palate. It almost appeared that he had no lip tissue at all. It would, in fact, be seventeen months before this child would be able to close his mouth for the first time. He also had what appeared to be tight bands wrapped around his left wrist. The hand beyond that wrist was larger than the right hand. He was missing one toe - two other toes on the same foot were joined, and on the other foot, one toe appeared to be only a tiny bud. On his back were three bright red birth marks and over his lower spine there was a curious looking lump. The farmer and his wife chose to relinquish their baby in hopes that their selfless decision would lead him to a brighter future than they could offer him.
Joey was taken to the Holt Reception Center where he began the process of finding a home. For many babies - even babies with birth defects, this is a fairly simple process. For Joey, though, it was not so simple. This baby spent the next 11 months waiting -- and losing ground. He suffered from failure to thrive and weighed a dismal 7 1/2 pounds when he was only 6 months old. He lived in a total of five different Korean placements (hospitals, orphanages, and foster homes) and time and time again, families who considered adopting him chose to say no. But then, the agency approached us -- and the first time I looked at the emaciated, disfigured little face of this tiny child, all I could see was love. And I knew the child I was looking at was my son.... and I knew his name would be Joey.
Eighty-nine days later - at the age of 14 months, I held my son for the first time. I was already aware of his "anomalies". But none were enough to have made me turn away. Right away I began to look into what he needed for a normal healthy life.
He had the bilateral cleft lip and palate. Much to my disappointment, a surgery done in Korea did not turn out very well. He would be looking at a lot of surgery - but he was handsome!. I was a bit surprised at how involved his arm was with the constriction band. The hand beyond that band was very edemic - puffy and spongy -- but he could use it! The hemangioma were there -- and the toes were not -- but we would deal with it all. He was my son.
Joey has had a total of about 7 surgeries to correct the cleft. He is STILL handsome. His speech is clear and intelligible. He had a total of three surgeries on his wrist. His left hand is still larger and puffier than his right hand, but it is strong and fully functioning. The hemangioma all went away by themselves - even the subcutaneous one (the "mysterious lump" over his spine). And the missing toes have never slowed this powerhouse down.
Joey is now 11 years old. He loves animals and TV. He is very athletic. He has tons of friends and he does very well in school, where he is going into the 6th grade. He is very small for his age, but otherwise, nothing holds him back. He is an incredible child!
When I said yes to Joey, I know I said yes to a lot of unknowns. At the time I adopted him, they had not even put a name to his birth condition -- just a long list of anomalies. But regardless of the challenges he had to face in his future - I looked into the eyes of that beautiful child, and I knew deep within myself that I COULD NOT allow him to have to face them alone.
Joey -- what a kid! What an inspiration!
Joey's very severe cleft and amniotic band
Notice the interesting little toes. (left) Joey is newborn, weighing 7 1/2 pounds. (Above) Joey's first day home for adoption. He is 14 months old and weighs only 14 pounds.
It took Joey a long time to catch up to his "twin".
Jacob (standing) is only 70 days older than Joey,
but notice how much taller!
(left) Joey had surgery to release the band three times. This pic was taken the day of his band surgery when the entire wrist was done. (right) After the band was released, Joey used Coban on his arm (the wrap you see) to help to milk out the excess edema. He wore this coban every day for four years.
Joey (far left) and his brother, Jacob, and sister, Jessica-- note the comparison of the two hands now. The left hand is slightly puffier than the right. Both hands are strong and agile.
Joey's hands - after three surgeries and four years of wrapping, the left hand is only slightly puffier than the right. Both hands are equally strong and agile. Joey has full function of both hands. (notice the z-plasty scar.
Joey's feet are interesting, but fully
functional. The missing toes from the
right foot and the tiny toe (next to the
pinky toe) on the left don't seem to
slow him down.
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