Heart or blood pump. butt hole Bone of the Arm, Hand and  fingers. Kidneys  Ureters  Bladder  Genitals Food pipe, Swallow,  Gullet and Esophagus. Wind pipe, Breathing tube. Bones of the Neck, Back, Spinal cord.







I would like to share four stories with you that are true. In 1923 a second baby was born to Helen and Robert. The first child was a girl and the second a son. Helen was a very small mother weighing about 80 pounds and was about 4feet 5 inches tall. She delivered a baby on April 15, 1923. This baby was the biggest baby born in New York. He weighed 15 pounds 9 ounces.

He was not able to be delivered normally because he was to big and was stuck inside his mothers birth canal.. This was a life and death situation for the mother and the baby. The doctor decided to use a medical instrument called forceps. The forceps are like a pair of tongs that are shaped to fit around and behind the head of the baby. Placing the forceps in the birth canal and around the head of the baby after a long period of time the baby was delivered. The baby and mother seemed to be doing well after 24 hours.

It was soon discovered that the fingers of the right hand closed and the thumb turned in. The wrist became locked and bent inwards. The elbow joint locked at a right angle and right shoulder joint locked at a 160 degree angle. It was soon discovered that these multiple birth defects of the fingers, wrist, hand, elbow, and shoulder was because the forceps placed around the babies head also were pressing on and pinching on the brachial nerve in neck area.

This is called a brachial plexus injury. This trauma to the baby and parents was devastating but would have a profound affect on the lives of many people around the world especially in the classical music record industry and the companies who manufacture trumpets. This baby boys father was a musician and a stone mason and his mother was a pianist. This man wanted to teach his son to play the trumpet but had no idea how he could hold a trumpet with only one good arm and hand.

When this baby was 5 years old his dad built a stand with wheels and attached the trumpet to the stand and told his son, there's not a lot of opportunity in the world for cripples so you have to be good at something. The boy would walk around the house pushing this stand with the trumpet on it learning to play and not having to worry about holding the trumpet in both hands. His mother would sit at the piano and play music and he would stand there next to her with the trumpet on the stand and play along.

As this boy grew and his left arm got stronger he figured out how to hold the trumpet in one hand, pushing down the valves with his good hand and fingers and blowing at the same time while pushing the trumpet hard against his lips and mouth piece to get a good sound. This took a lot of coordination, strength and balance for a young child to do this.

This boy with the support of his parents and his dedication to practicing the trumpet started to catch the attention of many people. At the age of 9 years old he was asked to record records with the radio show Stars of Tomorrow as well as appear on this show every Saturday in New York City. He went to school and had his problems with people starring but his dedication to practicing his trumpet changed his life and he made room for cripples in the music industry.

At his High School graduation Dr. Edwin Franco Goldman the leader and conductor of the Goldman band in New York City offered him the position of First Trumpeter and Soloist in his 120 piece band. The Goldman band played concerts in New York City in Central Park, Prospect Park and Lincoln Center 6 nights a week in the summer months.

He accepted this offer and went on to be soloist for 35 years and played in front of millions of people. Instrument manufacturers were now making trumpets and cornets for him with his name on them and he represented many of the companies. He would write many band arrangement and write cornet and trumpet solos, write technique books for trumpet and tonguing skills.

Offers came from all over the world. He was soloist with the Baltimore symphony, New York Philarmonic, he taught at Julliard school of music at 20 years old, taught at Ithaca college. He started The All Star Concert Band in New York, represented the instrument companies Conn, Buescher, Bach, King.

Jimmy was guest conductor and soloist at the United States Military Academy, The United States Marine Corp Band, and The United States Air Force Band. Jimmy was soloist with the Band of America that traveled to 10 countries in Africa. Played solos at hundreds of colleges, High Schools and Juniors High Schools throughout America, and in many shows on Broadway.

He had friendships that lasted throughout his life with many great trumpet players such as The unforgettable Satchmo, Louis Armstrong, The Tonight Show Band Leader when Johnny Carson was Host Doc Seversen, the man with the bent horn the great Dizzy Gillespie and the fabulous jazz trumpeter Clark Terry. He gave private trumpet lessons to students in his home throughout his life.

In 1981 The Goldman Band was paying tribute and honoring this man and he was invited to be guest conductor at Lincoln Center. As he walked out on stage he received a standing ovation. After the applause stopped he took the podium, looked at the band as a conductor would, nodded his head, raised his arm to begin conducting his favorite number fell backwards and died. Where he began his career as a teenager and played in front of millions of people his life would end where it began. I write this to share with you that there are many rough roads having a child with birth defects. But there are also many good ones to. Life is filled with many unknowns and questions why things happen. Who would have or could have imagined that this baby born with these birth defects would touch so many lives. Maybe my grandparents Helen and Robert.

This second story appeared in Readers digest some years back. It is the story of a doctor who was caught in an earthquake in Mexico. I will not do it justice but when I find it I will write about it in more detail.

After the earth quake this doctor was trapped under the rubble for days. He went on to write that he would call out to his father in the middle of the night and after 5 days one night his father heard him calling in a dream. This father got his other sons and went to the site and searched and after many hours found his son.

It took a lot of time to remove all the concrete that was covering his body and his hands. He was taken to a hospital where it was discovered that his hands were severely injured and his thumbs were crushed. He was told that his thumbs would have to be amputated.

This man, a surgeon had no idea how he could make a living as a surgeon with out his thumbs. After recovering from his other injuries he called a surgeon in New York and made an appointment to see a doctor there to ask if he could save his thumbs. This doctor said this was not possible but there is a chance if you are willing that we can take your big toes from each foot and place them where your thumbs would be and with intensive physical therapy maybe you could practice medicine.

He decided to do this and had his toes put on his hands. After two years of intensive physical therapy and practice over and over this doctor returned to the operating room and does surgery with his big toes as his thumbs.

This next story is a letter from a mother to her daughter.

A Letter to My Daughter*

Dear Andrea,

It's hard to put into words all the feelings I have when I look at you. Born in August, you are too young to understand my words. But I want to capture my thoughts on paper now, because I know they'll be meaningful to you someday.

How can I express what a daughter is to a mother? You are what motivates me now. After 15 years of immersing myself in a career I love, your happiness is now my single-minded priority. You are so wanted and so important. Please remember this always, because there will be days when you wonder. Some people will make you wonder.

When your father and I chose to have you, some people questioned why we would bring a child into the world when you had a fifty-fifty chance of having the same condition I have, a deformity called ectrodactylism. That's a scary word but it simply means our hands and feet did not develop in the usual manner. Your maternal grandmother and one uncle have the same condition; your aunt and other uncle don't.

But your dad and I were delighted when we found out I was pregnant . We had waited a long time for you. When a prenatal test showed you had my condition, I was asked whether I would consider an abortion. I know the comment wasn't meant to be hurtful, but as you will see, Andrea, we are constantly bombarded with images of physical perfection on TV, in magazines and in everyday conversation.

The message seems to be: A flawless physical appearance is worth worshipping; But the message is wrong, a waste of time and energy, and mostly a waste of love. To your dad and me, your family and your friends, you were beautiful and perfect from the moment we saw you. But the word perfect is so deceptive, so subjective.

Physical perfection is a term that describes a human shell, not a human soul. What matters is what God sees on the inside: how we treat others, the spirit in which we work and play, our attitude toward facing life's challenges. Ironically, many people think the word perfect doesn't even apply to these, the most important human characteristics.

I believe God put each of us on earth for a special purpose, though it may take us a while to find it. When I was four years old, I told my mother I wanted to be a movie star. She gently pointed out that this wasn't very realistic, then paused and said "On the other hand , if you try hard enough, and you believe strongly enough, you can become anything you want to be, if it is God's will."

There will be obstacles, Andrea, but dreams are what keep us going. My dreams were shaken a bit when I began kindergarten and some of the kids stared at my hands and whispered. Your grandmother told me to tell them I was born this way, that it doesn't hurt, and everything is fine. She said, "Forget yourself and other people will accept you better."

In this light my parents encouraged my brother and me to step forward and be the first to shake hands with people. We learned that if you approach others if a natural , confident way, they'll respond in kind. As my parents helped me, your dad and I want to help you. In Austin, Minnesota, where I grew up, my dad, your grandfather, Olaf Nelson, worked hard everyday of the year at his "Breeze" Gas Station.

Mother had her hands full raising four kids and being bookkeeper at Breeze Gas. When I tried to beg off my share of doing household chores (sometimes using my hands as an excuse), she would smile and hand me a broom anyway. Of course I could vacuum, dust and wash dishes.

You might find your teen years difficult, because emotions are so fragile then. For me high school was an emotional minefield. I tried to compensate for my difference by being the life of the party. I'd make jokes about myself, even labeling myself "the firecracker safety poster girl." I hated wearing clunky "Minnie Mouse shoes," so I forced my feet into shoes like the ones other girls wore, even though they forced me to walk in great pain.

In my freshman year I thought I'd conquered all my problems when one of the school's most popular boys became interested in me. I was thrilled when he asked me out. We dated on and off for about a year, until one day when my world caved in. I had just opened my locker when to girlfriends came up. "We just heard something awful," they said. I turned, expecting the latest gossip. " Your boyfriend calls you 'lobster claws' behind your back," one blurted. I felt as if I might throw up when I heard these words.

"His friends had dared him to date you so he could tell the other guys what it was like to hold hands with someone like you," the other one said. It can't be true, I thought. It has to be a lie. Still, I knew I had to confront my boyfriend. He hung his head. But he looked at me and said he had come to really care for me and he hoped it wouldn't change our relationship.

But the damage had been done. For almost two years, I didn't allow myself to trust boys. Now ultra-sensitive about my appearance, I began shoving my hands in my pockets. That's when your grandmother said something important to me: "You'll never climb the ladder of success with your hands stuffed in your pockets." The experience, however, taught me a valuable lesson. I hope you will learn from it too.

Your true friends will be those who see through to the inside and accept the physical difference. You will recognize them, because I know you will become a true friend yourself. I suspect you will have many very good friends. Being a good friend, Andrea means you have to look deeper for the truth. My Sunday school teacher, Mr. Paulsen, was endlessly patient answering my questions. Why were people cruel to Jesus? Why did they make fun of him? He said, "God doesn't expect us to automatically understand others. We have to keep trying, and in time we will."

I began to understand that we're all limited in different ways, not always physically, but sometimes in our views about others, or how we feel about ourselves. Some people feel they are to heavy, others hate their hair. Some people feel they were born with the wrong social background, and they let those misconceptions cripple them.

Andrea, never let the world tell you what you can do. When I wanted to take typing in high school , I was told I couldn't because I would slow the down. So I borrowed a friends typewriter and taught myself. Times have changed and you won't be stopped that way, but there may be other obstacles.

I'd never forgotten my dream of being a movie star, but I found something even more interesting: the school newspaper and the yearbook. I discovered journalism. I wanted to be a reporter. To work in television was still a haunting dream, but I figured my chances were slim since the women I saw on TV were so "flawless" (there's that word again). I set my sights on radio.

I took some courses in radio and television, and sent audition tapes to several radio stations across the country. I landed my first job on the air in Kansas City. I'd been hired over the phone, and when the program director saw me in person, he stared at my hands. Clearly he was questioning whether I could handle cuing the records on the turntable, a simple manual task.

He didn't have to say anything, but I saw his doubts. So I simply did what I always try to do, just show him. And you will too. I spent the next four years loving radio work. I went from Kansas City to New York and finally to San Diego.

But still I knew I would not be completely happy until I tried my dream of working in television. I decided to give it my best shot. At first the resistance seem overpowering. Some stations simply turned me down without comment; other TV directors shook their heads. One said, "We're sorry, but your hands might distract viewers." But I didn't give up, Andrea. I kept applying from station to station in San Diego.

After I'd spent a year and a half making the rounds, Ron Mires, news director of KGTV, offered me a job as consumer reporter. I know he was taking a chance, because they'd never before had anyone on camera who appeared to have a disability.

Three weeks later I felt a crisis looming. When I started at KGTV, I wore a pair of prosthetic gloves. They looked very real, but they didn't feel real to me. I felt like a phony. My body language was stiff on camera.

Still, I was reluctant to complain. You have to understand that opportunities in television news are few and far between. But I didn't need to complain; my news director had noticed my unease. "It's these gloves," I told him. "I feel like I'm wearing a mask." He said, "Remove them. Get out there, and let's see what happens."

I was relieved, but mostly scared. I knew my television career hung in the balance. Negative phone calls or letters from viewers might shatter my dreams forever.

That night on the five o'clock news I appeared on the screen with my hands as they are. Then waited. The station's switchboard lighted up, and letters came in. But every call and letter was positive. Many complimented me on letting myself be seen as I actually was. And some, who obviously did not even notice my hands, commented on my new "naturalness."

So, this is what I pray for you, Andrea. I pray that you will have courage and confidence. I pray that you will dream and work hard, expecting the good in yourself and others. I pray that you will see the beauty that God sees when He looks at us. God bless you. I love you so much.

Your loving mother, Bree

Bree Walker is the television anchorwoman for CBS in Los Angeles. I spoke with her during the 2000 para-olympics in Sydney Australia where she was commentator. Her husband is also a commentator Jim Lampley. I wanted to share this with parents to let them know that you can help make your kids dreams come true by supporting them in whatever they want to try.

They will fall, get kicked around emotionally like others but they have to pick themselves up and go on. Its the GAME called LIFE.. Some people will play dirty to prevent you from your goals. You have to keep trying to reach for what ever the goal is in the game of your life. Don't let someone else determine the outcome of your life.

Step up to the challenge and take that chance. Don't look back on your life and say I could have, I should have, I would have done that, live your life by saying I did try and will continue to try. Whether you get what you wanted or not is only part of the game. Taking the first step is the beginning of your life looking at yourself.




TEF/Vater® International
is a nonprofit organization founded by Greg and Terri Burke after their daughter, Jaclyn, was born with esophageal atresia in 1990.  To those children, born and unborn, with esophageal atresia, tracheo-esophageal fistula, and/or the VATER/VACTERL Association, and to the very special parents and medical staff who love and care for them, this organization is dedicated

 



phone 301-952-6837 | fax 301-952-9152 | email info@tefvater.org