My parents were full of anticipation as they stepped into the obstetrician's office. There were so many hoops to jump through and things to experience-the questionnaire to answer, the nurse to sign them in, and the month-old magazines piled in stacks on tables. Waiting to be called into the back room seemed like an eternity.
For most parents, their unborn child is imagined perfectly, as the ideal combination of all the best facets of husband and wife mixed into one brand new person. In a loving family, the child represents the hopes and dreams for a next generation, sure to be smart, athletic, and beautiful. As you look at an ultrasound, you see the next Einstein, the next Jeter, Gretzky, or Jordan-or if it's two heartbeats, they're the new improved Venus and Serena.
For my parents, as there must be for any pregnancy, there was always a chance something could be out of order-so they made every effort to take all the appropriate precautions and followed every recommendation to ensure a healthy child. And they knew that the first pregnancy can be a stressful period, because so many things have the chance to go wrong.
I was their first born child, so these emotions weighed on my parents, Scott and Anita, all the more. But my mother's pregnancy had been completely normal. So as they prayed for a healthy and happy child that could grow up to fulfill their greatest dreams, sharing their emotions and their hopes for the future, they had no reason to worry. There were no problems. There was no reason for concern. The quiet fears were all drowned out by their eagerness to see their child for the first time.
Medical technology wasn't quite as advanced in those days as it is now. The clarity of today's ultrasound is a world away from the grainy pictures of a mere two decades ago. But the technology was still good enough to detect some of the things that might appear to be off-it could show doctors the signs of a difficult pregnancy, or something worse.
The nurse that day was kind and pleasant. She told my mother there was nothing to worry about-she was familiar with so many families who don't nurture their unborn children, either because they don't know any better, or because they don't care. Apathy is the main reason why so many children face dangerous problems, she said-and with all the effort my parents had put into being healthy and valuing this unborn life as an equal part of the family, my mother was doubtlessly carrying a perfectly healthy baby.
The nurse took the cold gel and slathered it across my mother's stomach, moving the ultrasound sensor methodically around her womb. She pointed out my head, abdomen, and beating heart for my parents on the blurry pictures. Then she began to make measurements to get an idea of my anticipated birth date. She measured the circumference of my head and midsection along with my spine.
A sudden look of confusion crossed the nurse's face, but she continued to move the sensor around to view different areas. The pulse from the ultrasound broke the deafening silence with a rhythmic beat.
My mother was fixated on the sensor moving across her abdomen, saying that it was making the baby kick-but my father noticed the bewildered look on the nurse's face. He looked at the monitor, trying to make out the blurry picture.
The nurse explained that she was having trouble finding the baby's femur. The leg measurements are how the doctors estimate the child's age, and sometimes the leg is tucked close to the torso. She decided to find a doctor, just to double check the pictures from the machine.
When the nurse excused herself from the room and stepped outside, my parents started to feel nervous. My father couldn't hear the conversation from inside the room, but he shared a concerned look with my mother.
"I'm sure everything is going to be okay," my father said. "This probably happens all the time, and we just don't know it."
Before my mother could reply, a radiologist stepped into the room. He greeted my parents cordially and started to analyze the reading from the ultrasound, looking closely at the ultrasound monitor. The room was dead silent as my parents watched him, chilly with the cold of the hospital air conditioner.
Finally, the radiologist's chair creaked as he turned and said, "I believe everything looks normal ... You two have nothing to worry about."
The assistant couldn't find my limbs, but the radiologist said that, after a few minutes of searching, he had found something that looked like it might be a femur, or at least something they could measure to determine my age. The radiologist passed the sensor back to the nurse and asked her to see if this measurement seemed to match their estimates. It matched perfectly.
The radiologist reassured my parents that sometimes limbs can be hard to find, as they can get pushed behind the placenta, making it difficult to obtain a good image. Oftentimes it will even appear that something is missing when it isn't.
He'd seen this sort of thing happen on a number of occasions, and he'd never seen skewed ultrasound results end up as anything other than a normal birth. The chance of a child being born with minor limb dysfunction is one out of every few thousand, and the likelihood that the child would be born with all four limbs severely affected is one out of every few million.
The radiologist had a lengthy conversation with my parents, explaining the situation. He told them in nearly all cases where a child is born with a serious birth defect, the ultrasound will detect it. He saw nothing in the ultrasound to be cause for worry. If they found something later, the doctor said, they could discuss other options.
"What other options?"
"Other options generally involve aborting the child surgically," the doctor said. "If there is a serious dismemberment in the child, then the likelihood that the child could have a normal life is drastically reduced. Instead of putting that burden on the parents to care for a physically challenged child, we generally recommend you abort."
"That's not an option for us. We would never consider it."
The doctor told my parents to go home and rest easy. With a child that is only seventeen weeks old, these things happen quite often. He said he was confident they had a perfectly healthy child.
"Don't waste your energy worrying about something that virtually never happens. Save it for when the child is born."
My parents thanked the radiologist for taking the time to analyze the ultrasound, and the nurse apologized for the false alarm. But when my parents left the office, they were both worried.
For the next five months, my mother had regular check-ups that never indicated anything would be wrong. They even had another ultrasound in the third trimester and found nothing wrong. My parents' feelings of worry were gradually pushed away as they prepared for my arrival with hope and confidence.
They were shocked when I was born.
TRAUMA IN THE DELIVERY ROOM
It was a bright Sunday morning, March 23, 1986, when my mother felt the first delivery contractions. The abrupt pain was a clear sign that it was time to head to the hospital.
My parents lingered in the delivery room together. Walter Reed Army Medical Hospital was, at that time, the premier hospital in Washington D.C., and for my father-a military policeman-it was the obvious place to go.
My parents spent hours discussing their hopes for their child, still unaware of whether it would be a boy or a girl. My parents were young, only a year into their marriage, and still very excited with the newness of it all. They good-naturedly disagreed about how many children they wanted to have-my father wanting a small family, my mother wanting a large one.
They started to feel a little fatigued as hours passed by and the contractions continued. My mother's water still hadn't broken, and she had been in labor for more than twelve hours. An epidural was administered through an IV as the contractions moved closer together.
By late Monday morning the water still had not broken. The doctors at Walter Reed decided that it was time to break the water and give additional medicine to my mother to hasten the contractions. Two nurses and a pediatrician joined the family obstetrician in the delivery room as my mother's contractions intensified. It wouldn't be long now, they assured my parents.
At 12:13 PM on Monday March 24, 1986, I came into the world. I was facedown and tucked in the fetal position.
My father was at the bedside, gripping my mother's hand. He wasn't able to see my face or chest because I came out facing the ground. For a moment, everything appeared to be normal.
Then the obstetrician passed me to the pediatrician without saying a word to my parents. He took me over to the table inside the room and washed me down with his back turned to my mother and father. He gave me the standard Apgar test (the health checklist for every newborn) as if nothing was wrong, but something clearly was.
The excitement and relief at the birth of their firstborn quickly turned into strained confusion. No one in the room would make eye contact with them. My parents were both too scared to ask what the problem was as the pediatrician wrapped me in a blanket and passed me to a nurse-both immediately left the room and shut the door behind them.
The obstetrician knelt down to finish the delivery by stitching my mother. A thick cloud of fear loomed over the room. My parents were stunned and silent.
Eventually, the obstetrician stood up and said, "I need to check on some things right away with your son, but I should be back with him in a moment."
"So it's a boy?"
"Yes, Scott ... but some tests need to be done to make sure everything is in order before you can see him," the doctor said. "I'll go and check on that now."
The pediatrician stepped back inside the delivery room and paced toward my parents as he stared down at the floor. He slowly lifted his head to speak.
"There are some problems with the baby."
He paused, as if trying to find the right words, before explaining: "He is missing most of his limbs. We did some preliminary tests to determine if he has all of the necessary internal organs to survive, and everything else seems fine."
"It appears as though he'll be all right, but we want to make sure before you see him."
The doctor left my parents alone inside the delivery room. They didn't know what to do-they were too shocked by what had happened, too scared of the unknown, and too confused by the entire situation. They felt as though the world had collapsed around them. My father looked into my mother's eyes, and both of them began to tear up out of sheer uncertainty.
The obstetrician looked at my parents and tried to speak. "I'm Sorry ... I'm sorry," was all he could manage to get out. He left to check on me in the intensive care unit.
My father glanced over at the IV running into a vein in my mother's arm and noticed that the tube had lost its fluid. He rolled her over towards her stomach to examine what happened and discovered that during all of the chaos of the delivery, the IV had somehow slipped out. The table and its sheets were soaked in blood from a large vein, the blood running all over her back.
My father screamed out for help. Nurses rushed into the room, shoved the IV back inside of my mother, and rushed to pump blood inside of her to replace what she had lost.
My father stumbled back and collapsed in a chair. He was sick to his stomach and felt almost faint from trauma. His newborn son was undergoing urgent tests for a problem that no one could explain to him. His wife nearly died from blood loss on the delivery room table. Nothing could have prepared him for this.
The fear of the unknown nearly overwhelmed my parents before they were even allowed to see me. It took them a moment to gather courage to see their firstborn child-hoping for the best, praying against the worst-when the pediatrician returned, carrying me wrapped inside a blanket. He had a look of sympathy on his face as he passed me to my parents.
My father looked down at me and beamed. With my head supported by his shoulder, he took his left hand and uncovered the blanket to see my missing limbs. He didn't grimace. For a moment, he was proud that my features already resembled his.
My mother sighed with joy as she said, "I can't believe he's so beautiful."
As they talked, my parents felt God was telling them that everything would be all right; that He wanted them to celebrate the birth of their firstborn son, that they should dispel fear and doubt. The shock and uncertainty were still there, but prayer and faith kept my parents from succumbing to pessimism or depression. Prayer kept my parents going in the worst moments, even though it did not deny anything or magically remove worry. It was a dialogue of emotion and faith that kept my parents as balanced as they could be under the circumstances.
A nurse returned shortly after to carry me away for more tests. I spent the next three days in the hospital away from my parents. Half of the time I was in the intensive care unit while my family had to wonder what else could go wrong. Three days gave them a long time to ponder the worst possibilities, and still no one could provide a definitive answer about why this had happened or what the consequences might be.
Thankfully, the support system of my extended family was already coming together to help out. My grandparents on my mother's side were visiting family in Tifton, Georgia when I was born. As soon as they heard about me, my grandmother and grandfather rushed to the Atlanta airport and headed to Washington D.C. They knew it would be close to a fifteen hour drive and couldn't stand the thought of their daughter and son-in-law being alone at such a time. My father's mother flew in from Michigan at the same time. When they arrived, they found my parents distraught, exhausted, and shell-shocked by the experience.
Social worker after social worker tried to comfort my father and mother, but failed-my parents were overcome by needless guilt, denial, anger, and resentment. I was still going through test after test at this point, but each test just meant another possible worry.
My parents and grandparents prayed for hours that I would survive the first few days of my life. No one apparently had any certainty about what would happen to me. There were only questions that couldn't be answered.
My father didn't know what to do. He had planned on leaving the service once his term was up in three weeks. He was going to attend college in the fall. But now, as a young father with little margin for financial difficulty, he faced an enormous burden-the prospect of a tidal wave of medical bills, treatment, and God knows what. His hopes of obtaining a college degree appeared to be crushed; he had no immediate potential for a steady job, but he needed to find one. Even then, how would he pay the bills? He had every reason to expect that I would be far more expensive in my needs than a normal child, and without a college education, my father feared he could not earn the money our family would need.
After the hospital released me, my parents had a follow-up visit with Dr. Charles Epps, a specialist who had experience with kids like me. He told my parents that my condition is technically called Quadramembral Phocomelia, a defect that has an unknown cause. Congenital amputation happens about once every two thousand births or so-but it usually affects just a finger, or toes, or an arm.
Dr. Epps told my parents that it was likely I would end up using a wheelchair to get around when I was older. He urged them not to let anyone amputate my feet, explaining that while it would be easier for my legs to fit prosthetics if they did so, I would likely never be able to walk with prosthetic legs. He also arranged for my parents and me to meet with another family, who had gone through this same ordeal eighteen months earlier.
Through prayer, my parents came to accept that they couldn't change what had happened. They couldn't make me the perfect child they had dreamed about. They could only accept the reality of it, lean on their family, and have faith that things would work out for the best. They prayed for guidance.
Three weeks later, we moved to Fort Wayne, Indiana, where my mother's parents lived. My parents knew they needed help to raise me and to bear the emotional and financial burdens of the coming months and years.
My parents focused on the fact that they had a responsibility to work together and try to give me the best and happiest life that I could possibly have. In the end, I was the firstborn son in my family-and nothing else mattered.