Monday, November 21, 2005

Face Transplants

While the concept is as old as Rod Serling, it seems that sci-fi has now reached the labratories. The technology has not been perfected, but scientists and doctors are experimenting with face transplants. (It all seems just a bit creepy to me).

Here is an excerpt from the full article.

A team of doctors at the University of Louisville in Kentucky is moving forward with a plan to attempt the world’s first face transplant. They have applied for permission from the University’s research ethics committee to remove a face from a cadaver and transfer it to a live volunteer willing to go through with the surgery. If approved, the operation could take place before the end of this year.

There are apparently many volunteers willing to undergo a face transplant. While some people who have endured facial disfigurement learn to adjust, others do not. They would gladly take the risks involved in such a surgery for a chance to regain the normalcy that, in our appearance-conscious society where people undergo multiple surgeries just to look younger, is difficult to achieve with a severely deformed face.

The problem is that there are a number of very real and serious risks confronting the first subject. For example, the drugs used to prevent rejection by the body may fail, leaving the recipient with the nightmare of the transplant being rejected and, with death likely to quickly follow, no other options. In addition, the drugs involved are so toxic that cancer, kidney failure and other problems are likely to eventually occur, even if the initial surgery is successful.

Even more challenging is the problem of adjusting to a new face. While those with severe facial deformities might hope for any alternative, a transplanted face that does not work right, looks strange or reminds people of someone who is dead, would pose very difficult challenges to anyone who receives it.

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Terukuni Fujii

Here is a very personal story from the Taipei Times archives that I thought was very insightful. Though I was sometimes teased, I certainly never experienced any persecution or cultural ostracism to this level.

It is the story of a Japanese man named Terukuni Fujii who developed a mark of some sort on his face when he was two years old that developed into benign tumor that grew to deform his face. He seems to have overcome all the odds as I see he is currently a professor of Science of Nursing at a university.

Fujji is now 46 years old. There is a small photo of him included in the article.

Here is a quote from Fujii from the article:

With the release of his autobiography, entitled Face of Destiny, last October, Fujii became a torch bearer for 1 million people in Japan with deformed faces.

"Many of those people tend to cloister themselves at home as others look daggers at them," Fujii said in a recent interview.

"I urge those people to go out and tell others `I suffer, my heart aches,'" from the way they are treated, said Fujii, who has frequently been spat at in the street.

"I have been saying the same thing for two decades ... but there are finally moves to break down the invisible wall" between the handicapped and others, he said.

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The Dreaded Buttons!

I managed to find this old photo. This is probably a few days after the buttons surgery. This picture was taken after I was cleaned up a little, but you can see my eyes are still swollen shut and I think my mouth looks a little funny because of the surgery I had on the roof of my mouth. Here you also can see Papa the banana (was he ever that yellow)?!?!

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Monday, November 14, 2005

Day of Discovery

This summer while I was volunteering at the Joni and Friends family camp in Indiana, myself and several other families attending camp were interviewed.

I got a letter a couple of weeks ago from the producers saying that they have selected some of my interview segments for one of their upcoming programs.

The show will highlight lessons that families of disabilities have learned, as well as the joys and struggles they have experienced. The program will be a conglomeration of video footage shot at the family camp along with family photos.

The program, Day of Discovery, will air on February 19. The show airs on the i Network (formerly PAX Television) at 7:30 a.m. on Sundays. A listing of local station air times can be found by following the Day of Discovery link at their web site:


Vicki's Story - Part Five

Click here to read Part One
Click here to read Part Two
Click here to read Part Three
Click here to read Part Four

Part Five

The first day of sixth grade was hard, but in retrospect, went as smoothly as it would for any “new kid.” For the most part, the kids were still young enough (and curious enough) where they took my sutured-up face in stride and I made friends pretty quickly. Sixth grade was really the end of Innocence for me. Seventh and eight grade proved to be two of the most difficult years of my life. Again, in retrospect, I don’t think I suffered any more than any other junior high kid who had the misfortune of being too tall, too skinny, too chubby, too shy, too smart, or who had too much acne. In other words, no one gets by with anything when they’re 12. And in fairness, I dished it out just as bad (if not worse) than everybody else. Junior High is the closest I ever got to thinking Darwin was a genius. Nowhere else in the world does one see evidence of “Survival of the fittest” than in the confines of a junior high classroom.

By seventh grade, I was a chubby pear-shaped girl, I was pale as a ghost, flat-chested, with a deformed face, completely non-athletic, shy, and I had braces…on the top teeth only. To make matters worse, I knew nothing about pop culture, popular music, movies or anything else any “cool” kid would be talking about. About the only thing I was good at was spelling….which made me even more of a nerd.

I hated gym class more than anything else in the world. Not only was I an uncoordinated weakling but my last name began with an “A” – which means I got to go first. About three or four kids into the activity, the whole class would be bored and disinterested, but that first guinea pig with the “A” names – all eyes were on us – one false move and you got it. You know, nothing reverberates off those high gym ceilings more than the cacophonic laughter of judgmental twelve-year olds.

I was fully convinced that 99% of my problems would go away if they would outlaw junior high gym class. Those horrible uniforms that earned for me daily taunts about my pale, skinny bird legs…my inability to score a goal even when I was a foot from the goal and the goalie was off on the sidelines eating an orange wedge. And what is with those dodge balls? I must have had a homing device in my forehead – every single dodge ball ever launched between the years of 1984-1986 seemed to land square between my eyes (which of course sent my face bleeding like mad because of those blasted buttons wired to my face)!

Then, as if things weren't bad enough, some teacher had the bright idea to start a softball league for the seventh and eight graders. I had no desire or intention to join. But the classes were small and lo and behold, EVERY kid in all of seventh and eight grade signed up. After hearing, “You didn’t sign up for softball?!” a hundred times, I crumbled under the peer pressure and signed up.

The dreaded day came – the first day of practice. The entire seventh and eighth grade was out on the softball field next to the school. The teacher decided to give every single student a chance to bat.

My heart started beating. I was more nervous about trying to bat in front of my classmates than I was before my last surgery. “What if I strike out?” “What if they make fun of me?” “What if someone trips me when I try to run to base?” “What if the whole crowd laughs at me?” Or, “What if the pitcher, just to be mean, whales me in the face with the softball?” Hey….it was known to happen before with the dodge ball, so my concern was not completely paranoid.

Then I had a bright idea! I could stall my turn and if I waited long enough, my mom would be there to pick me up and I could get away! I had found my way out – I started to breathe easy.

I heard a car pull up and turned with anticipation and was shocked to see, not my mom’s car, but my dad’s. My dad NEVER came to pick me and my brother up – never. My heart started to beat. He came out of the car and walked toward the field. Dad was always in a hurry to go. “Let’s go, Dad!” I pleaded. “No, no….I want to see you and your brother bat!”


I was so scared. I prayed and prayed that the kids wouldn’t make fun of me in front of my dad. I didn’t want him to know how mean they were to me. I went out of my way to not tell my parents about all of their cruelty. I didn’t need sympathy. It was shameful to me to admit to my parents that I was a freak that nobody liked. I had tried so hard to hide all that from them – and here was my dad, on the sidelines of a baseball diamond, in front of my entire class, about to watch me strike out and get laughed at. The secret would be out.

I panicked. I was so desperate I actually decided to admit defeat (this was long before I learned that telling your dad something meant he would immediately come up with a solution).

“Dad, I can’t bat. I’m going to strike out.”

I was merely forewarning him. It was just a fact, nothing more.

“Go grab that bat!” Dad said.

My heart sank….he was supposed to just accept the fact that his daughter was an athletic moron and take me home. Now, I had just unwittingly gotten myself a batting lesson.

I went and picked up the bat and dad gave me a spontanius batting lesson right there on the sidelines. He showed me how to stand, where to position the bat, where to look, when to swing. I humored him, but knew once I got up there, I’d panic, louse up, get hit in the face, and have to face the humilation of my dad witnessing the whole treacherous experience.

Dad’s coaching session was interrupted by the teacher yelling, “VICKI! You’re up!”

“Go get ‘em!” my dad said patting me on the back. He had such a huge smile on his face. Such expectation. I was about to humiliate myself and my dad in one fell swing in front of every kid I knew and he didn't even know it.

I got to home base. My arch-nemesis was the catcher – sitting there cockily whispering, “You’re gonna choke, Anderson.” I felt like I was stuck in a really bad after school special. This was a nightmare.

I looked up at the pitcher – none other than the eight grade atheletic king, Hein Lee of South Korea. His muscles buldged as he warmed up his swinging arm. My heart was beating so loud it was as if it had jumped out of my flat chest and started running around the bases without me.

“You stink, Anderson….” The catcher antagonized.

I looked at my dad on the sidelines, he was grinning like a Muppet.

“Oh God… me” I prayed. I sucked the tears back into my face. I was so scared. “Please don’t let the ball hit my face,” I prayed. “Oh God, please don’t let me strike out.” I positioned my feet just like dad had showed me. “God, please don’t let me strike out, please…” I took a deep breath and lined up the bat with my shoulder.

The ball came flying at me. “Choke, choke….” The catcher chanted.

I heard my dad yell, “Now, Vic!”

I swung that blasted bat with all my might, then I heard something I had never heard before and would never hear ever again --- the crack of wood slamming against a softball. The ball retaliated and catapulted through the air. I was in shock, I stood there just staring at the ball.

“RUN! Run to first!” I heard someone screaming.

My feet took over and I ran to first base…and then to second….and then to third. By the time my foot hit home plate, the outfielders were still in the neighboring yard to the school looking for the ball.

“SAFE!” the ump called. I looked down at the catcher with a smug look of victory on my buttoned-up face. “Pure luck,” he sneered.

I didn’t even care…I walked over to the sidelines with the echo of my dad’s voice screaming, “Go, Vic! Go, Vic!” ringing in my ears. It was the happiest day of that entire school year.

It didn’t earn me any respect or any kindness, but it taught me something about God. Here He is with a universe to run – the Space Shuttle Challenger had just blown up, there were things going on in the world – big things – and here was God, taking the time to bend His ear to a silly seventh-grade girl begging for the strength to hit a stupid softball.

Sometimes the softball incident would come to mind to remind me that God was there, he was listening, he did hear my prayers, he did care about me, he did have a plan for my life. But as I got older, the memories became fuzzy. I forgot all about buttons and baseballs and God's goodness...


Friday, November 11, 2005

Down Syndrome Testing & Abortion

Al Mohler and Hugh Hewitt have both recently reported on their blogs some disturbing new trends in genetic testing, Down Syndrome, and Abortion.

The New England Journal of Medicine reported on Thursday that a fetal screening test for Down Syndrome has been developed that can detect Down Syndrome as early as the first trimester of pregnancy.

Or, to quote a corresponding article in the Washington Post: A first trimester screening test can reliably identify fetuses likely to be born with Down Syndrome...

The word "likely" really shakes me.

Instead of pouring all of this money and research into developing screening tests, why doesn't the medical industry pour that money and research into curing Downs?

Hat Tip: JT

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Thursday, November 10, 2005

Craniofacial Birth Defect Research

I just read an article posted on the USC Newsroom website. Though the article is a few years old, there are some very interesting statistics included regarding cleft palate births.

  • One in 700 American children is born with cleft lip or cleft palate, although the incidence is one in 300 for native Americans and one in 500 for Hispanic and Asian populations.
  • Every child born with this condition needs four major surgeries,” said Shuler, director of USC’s Center for Craniofacial Molecular Biology. “In California, these multiple surgeries cost the state’s children’s services agency an average of $1.5 million per child

Incidentally, the article concludes by saying:

“Some of these birth defects are genetic, some are environmental and some are both,” Shuler said, “but they all result from mistakes during fundamental reactions that occur as the craniofacial complex forms.”

On one level, I can read that paragraph and understand and agree completely with every word. From a medical, physiological, and development perspective, we can determine what is "normal" and "abnormal" by the frequency and rarity of which something occurs.

However, viewing the sentence through a spiritual lens creates some tension. When referring to babies supernaturally birthed by a Creator, we must ponder what words like "mistake" do to misrepresent the sovereign and intentional nature of God.

To believe that God knits us together in our mother's womb and to also believe that sometimes mistakes occur in the womb, is to conclude that God has made a mistake. But Scripture says that we are fearfully and wonderfully made. (That verse isn't just for the pretty people)!

Is living with a deformed face difficult? Yes.
Is it painful? Yes
Do I wish it would go away? Yes.
Do I believe it was a huge mistake and God dropped the ball? No.

I know there are occasions when we have to use words like "normal" and "mistake" -- I point this out only because I want to make it abundantly clear that, biblically, God doesn't make mistakes when he knits us together. Our lives (and faces) are not the result of freak accidents or uncontrollable circumstances, or fate, of bad luck, or the sin of our parents, or whatever other lie we have conjured up and come to believe. And that doesn't just go for those of us with deformed faces - it goes for everybody.

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Monday, November 07, 2005

Vicki's Story, Part Four

Click here to read Part One.
Click here to read Part Two.
Click here to read Parth Three.

Part Four

My eyes were black. They were so swollen it looked as if they were hiding ping-pong balls instead of eyes behind them. A large tubular-shaped piece of cotton had been sutured to my nose. The cotton crawled up my nose, its whiteness buried in dark brown blood, strapped to my nose with dark black thread. It looked like a leech had crawled up my nose and died there in mid-motion. On both sides of my eyes, placed to the left and right of the bridge of my nose, were the infamous “buttons” that I had heard about for many months but could not, or perhaps would not, imagine. They were bigger than I expected – perhaps the size of quarters. An off-white rubbery button. Inside the buttons was a mass of tangled wire, woven together with bloody cotton balls. The inner knots, crusty with dried blood, protruded out of the center of the buttons. I reached up with my index finger and touched the center of the button as lightly as I could. It was hard as a rock. The mere touch sent a painful burning sensation through my nose. But perhaps the most grotesque thing of all was the pathetic expression upon my face. My mouth was down turned into a frown so deep it was almost like a caricature. “How could I expect anyone to look upon this?” I wondered. Here I was, looking at the reflection, staring in a trance at the grotesqueness of it all. And perhaps that’s why I never faulted the onlookers in the stores and on the streets too much. I myself was transfixed by the horror of it, sitting there alone in my hospital room, starring transfixed at that make-up mirror over and over again as if I were watching some sort of television show. And then, the mood would be broken, when I realized that the image in the mirror was no act of Hollywood, but indeed my very own face.

I didn’t cry. I couldn’t. It would have hurt to have touched the buttons to wipe away the tears.

I wish I could remember now what was going through my head at the time. But my guess is, it was nothing profound. I was eleven years old. It hurt to move and I was scared to tell the nurse I had to go to the bathroom for fear that walking there, or moving to maneuver a bedpan underneath me would hurt too badly. So, I sat there in pain, praying it away. Finally, after about a day of holding it, the nurse announced that if I didn’t go to the bathroom soon, I’d have to have an enema. She left the room and I asked my dad, “Dad, what’s an enema?” I can’t remember his exact metaphorical interpretation, but it was descriptive enough for me to hit the nurse call button immediately after that and tell her I had to go to the bathroom.

Now, around this time, I had a collection of stuffed animals. I had a special love for the stuffed bananas with faces on them – the kinds you could win at dime slides at the fair. I had a couple dozen of them in varying sizes. But being still a child, the thing I wanted more than anything in the world was one of the big three or four foot long ones – you know, the ones that no one could ever win.

A couple of days after my surgery, when my eyes were no longer swollen shut, my family came into my room. I looked at them and they all had huge smiles on their faces. When I asked what was going on, dad told me to turn my head and look to my right. I did so and there laying beside me on my hospital bed was one of the big five foot tall bananas!

For that moment, everything disappeared – even the buttons. My heart filled with a flood of joy and I felt like my heart would explode. It’s one thing to get something you’ve always wanted, but another thing to get something that you thought you would never get. My dad had gone and personally talked to the owner of ValleyFair and told him about me. My dad offered an exorbitant amount of money to buy one of the bananas from him. In the end, the owner gave one to him as a gift.

I remember being alone in hospital at night, turning over and seeing Papa (since he was the dad for all my other littler bananas) looking at me with the biggest smile and bright, laughing eyes. It might seem childish to have felt so loved by such an inatimate object, but for me, it was the only thing in my life that always looked me directly in my face and didn’t turn away, didn’t ask probing personal questions, and always kept smiling.

If only such kindness had been waiting for me on my first day of school…