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Hope and faith

A photo of in utero surgery made Samuel Armas famous
before he was even born. He continues to astonish today.

Samuel Armas has no recollection of the moment he became famous. Why would he? He wasn’t even born when it happened.

It wasn’t until the fifth grade when his entire class Googled themselves that he realized he had a Wikipedia page. He always knew about the “Hand of Hope” photo that captured him in utero at just 21 weeks gestation, undergoing experimental surgery to repair a lesion on his back caused by spina bifida. But the weight of the picture never struck him until that day in school.

Snapped by freelance photographer Michael Clancy in an operating room at Vanderbilt University Medical Center in 1999, the image captures Samuel’s tiny hand alongside the finger of surgeon Dr. Joseph Bruner. It appeared on the cover of USA Today and went viral, casting Samuel in the role of pro-life poster child before he took his first breath 15 weeks later.

It also launched a controversy over what exactly happened in the operating room that day. Clancy claimed the fetus reached through the incision in the mother’s uterus and clasped Bruner’s finger. He has since written a book about the picture and become a pro-life activist.

Bruner claimed he manipulated the hand in the course of the surgery, pointing out that the fetus was anesthetized. He has refused to publicly discuss the photo since 2009.

For Samuel, the debate is irrelevant. The 16-year-old is more interested in maintaining his grades in the gifted program at Alexander High School, winning his next Atlanta Junior Wheelchair Hawks basketball game and tussling with his little brothers, Ethan, 12, and 10-year-old Zachary, who also has spina bifida.

Most importantly, Samuel is living proof that a disability isn’t always a disadvantage. Every life has purpose and anyone can dream big.

Julie Armas talks to her 16-year-old son, Samuel, as she prepares dinner at their Villa Rica home last month. The two made history in 1999 when a photograph was taken of Samuel’s in utero surgical procedure to close a lesion on his spine. HYOSUB SHIN / HSHIN@AJC.COM

Photo: Samuel Armas, just short of his third birthday in 2002, with his father Alex at the playground at the Clinton Nature Preserve. Contributed by Monira Al-Haroun.

2

'Still our baby boy’
Julie and Alex Armas struggled with infertility for three painful years. The couple met in their early 20s while they were both working at The Sports Shoe in Douglasville. They dated a couple of years and married in 1993. Julie became a labor and delivery nurse and Alex began his career in aerospace engineering.

After two miscarriages, hormone treatments and intrauterine insemination, Julie became pregnant a third time in spring 1999. They were elated until 14 weeks along when she began cramping. She feared it was another miscarriage.

“I figured it was over,” recalled Julie. “I had an ultrasound and when I saw the little heartbeat was still there I cried tears of joy.”

Relief was soon overshadowed by worry. The midwife told Julie and Alex there was something unusual about the baby’s head. It was lemon-shaped. She referred them to a specialist but because Fourth of July weekend was coming up, the anxious parents-to-be had no choice but to wait for answers. So they went home and researched
“lemon-shaped head” online. All of the information pointed to the same diagnosis: spina bifida. A specialist confirmed it the following week.

Spina bifida is a birth defect that occurs when a baby’s spine does not form normally. As a result, the spinal cord and nerves are exposed — like a gap in a zipper — and often damaged. Impairment worsens the higher up the spine the lesion occurs.

The cause of spina bifida is unknown, but one theory attributes it to the mother’s inability to process folic acid. The risk of having a child with spina bifida increases with each subsequent child.

From her home in Lithia Springs, Julie’s mother, Elaine Crider, did her own online search on the diagnosis. She bounced all over the Internet and came across an experimental fetal surgery for spina bifida being studied at Vanderbilt University.

Performed while the child is in utero, the procedure closes the lesion and minimizes other issues, such as a chiari malformation, a neurological disorder that causes hydrocephalus, an excessive accumulation of fluid in the brain. The biggest risk for fetal surgery is premature birth. It can also affect the mother’s future fertility.

Among the options doctors presented to Julie and Alex was termination of the pregnancy, but they wouldn’t hear of it, in part because of their faith but also because of their struggle with infertility.

“That time was filled with bitterness and pain, then we finally had this successful pregnancy,” said Alex. “This was still our baby boy — the child we’d waited so long for. We would’ve done anything for him.”

A few weeks later, Julie was approved for the operation, and she and Alex traveled to Nashville to begin pre-op evaluation. During that time, they learned USA Today wanted to cover the surgery because 21 weeks gestation was one of the earliest fetal surgeries ever conducted.

Their initial instinct was to say no. They were under enough stress already. Inviting the world into the operating room felt too overwhelming and invasive, but Julie’s sister changed her mind.

“Showing the world that every life is worth fighting for gave us the push to do the story,” said Julie.

Her memory of the surgery day is hazy. Maybe she cried, maybe she held Alex’s hand until the last second before she was wheeled to the operating room, she doesn’t recall. What she does remember is a sense of peace. This was the right decision for their baby and she was sure of that.

Alex’s memory of the day is vivid. After Julie was taken back for surgery, he sought solitude in a hospital bathroom, dropped to his knees and prayed for his wife and child.

Photo: Julie Armas holds one of magazines that published the famous photo.

3

'Absolute shock’
A staff photographer at The Tennessean, Michael Clancy was ecstatic about his first freelance assignment with a national publication. USA Today hired him to photograph Julie’s surgery.

The reality of shooting a surgery hit the 43-year-old the night before. He hoped the risky procedure would go smoothly. He also hoped he wouldn’t get queasy.

When Clancy was ushered into the operating room, he was assigned a place to stand and ordered not to move. He was positioned at the back of the room, behind Julie’s head. He counted 13 people in the room, including the medical staff and the USA Today reporter. He was nervous and the tension was palpable. The room quiet as a whisper as the surgery began.

Unable to move closer, Clancy swapped out the lenses on his Canon EOS 1N film camera to get a variety of shots. His movements were calm and deliberate as he watched the surgeon wield the miniature instruments, specially made for fetal procedures. Near the end of the operation, while Julie’s uterus was outside of her body, Dr. Bruner briefly stepped away. The surgeon said something inaudible to Clancy but it made the staff giggle and Clancy exhaled, happy for a moment of levity. Then something pulled his attention.

“Out of nowhere, without anyone near it, I saw the uterus shake and watched in disbelief as a fist burst through the incision,” said Clancy. “I felt like I was the only one who was amazed. It was like the medical staff had seen it before. Dr. Bruner looked at me, then we both looked back at the fist and watched as it flailed back and forth. Dr. Bruner grabbed the tiny hand and I immediately reacted. I pulled my camera to my face, held the motor drive and fired as fast as I could. I could see the baby’s hand squeeze Dr. Bruner’s finger. I was in absolute shock.”

Clancy shot four frames before someone grabbed him around the waist from behind.

“I didn’t know who it was, but I said, 'What the hell,’” recalled Clancy. “I had just captured the earliest human interaction ever photographed. I witnessed something truly amazing.”

Hand of Hope

4

Hand of Hope
Julie and Alex saw their baby’s first photo with the rest of the world on Sept. 7, 1999. There, on the cover of USA Today, was a picture of their baby’s hand, completely emerged from Julie’s uterus, his fingers alongside the surgeon’s finger. Tears ran down their faces as they marveled over the image and fielded phone calls from family and friends.

“I instantly knew how special that photo was — and not just to us,” said Julie. “We wanted to show the value of our son’s life, disability or no disability, and that we’d do anything for him because we value him. We accomplished what we wanted.”

In the 17 years since the Hand of Hope photo was taken it’s still recognized worldwide. It was quickly adopted by the pro-life movement, appearing on posters at rallies. And the Armas family has become involved with the effort, speaking out against abortion locally and internationally.

The photo was not without controversy. Over the years Bruner has challenged Clancy’s retelling of the events. He did not respond to requests for comment.

Regardless of which account is accurate, for the Armas family the photo is an affirmation of what they knew all along. Their baby boy was fearfully and wonderfully made.

'It's not so bad'

10-year-old Zachary Armas hugs the family dog, Chassie.

5

'It’s not so bad’
Samuel Alexander Armas was born screaming on Dec. 2, 1999, at 36 weeks gestation.

His back was healed and he was healthy. He stayed in the holding nursery for six hours as a precaution and was brought to his mother’s room around 11 p.m. Alex, who had already given Samuel two bottles in the nursery, was asleep in the chair by Julie’s hospital bed. She chose not to wake her husband as she held her firstborn for the first time.

She unwrapped his swaddle and admired his tiny 5-pound, 11-ounce body. He was perfect.

Samuel learned to walk around 21 months of age and has worn braces on his lower legs to support his ankles ever since. He’s had to undergo various surgeries over the years on his bladder, his heel chord tendon and the muscles around his eyes.

Samuel learned to walk with the aid of a walker when he was 21 months old.  Contributed photo.

Samuel learned to walk with the aid of a walker when he was 21 months old. Contributed photo.

Despite the challenges and the risks, Julie and Alex knew they wanted another child, so they returned to the infertility doctor and underwent intrauterine insemination again.

A year later, the Armas’ second son, Ethan, was born healthy and typical. Then, a year later, Julie discovered she was pregnant again.

Fifteen weeks into her pregnancy, they discovered the child had spina bifida. Overcome with disbelief, Julie and Alex immediately put wheels in motion to return to Vanderbilt for the fetal surgery, but that never came to be. The National Institutes of Health had taken over the experimental surgery as part of a study in 2003 and the Armas family wasn’t selected for the procedure.

Zachary, who was also born with spina bifida, gets off a shot as his brothers Samuel and Ethan look on at their home in Villa Rica. Samuel and Zachary love to play basketball, but Ethan prefers Legos and Minecraft. 

Zachary, who was also born with spina bifida, gets off a shot as his brothers Samuel and Ethan look on at their home in Villa Rica. Samuel and Zachary love to play basketball, but Ethan prefers Legos and Minecraft. 

Julie and Alex welcomed Zachary on July 18, 2005. His back was surgically closed the day after he was born, and a shunt was placed in his head a week later to treat hydrocephalus.

When Julie first learned of Zachary’s diagnosis, she stayed in bed for three weeks. She didn’t know how she was going to care for three children, two with special needs.

“I thought, Oh my gosh, we’ll be a two-wheelchair family,” said Julie. “Now here we are, and so what? It’s not so bad.”

6

'I thank God’
It’s a school night, and the Armas family is bustling through their weeknight routine. Julie is cooking a new recipe for shepherd’s pie, when Alex walks through the door and greets her with a kiss. Zachary sits at the dining room table doing his homework. Ethan is building a Lego structure. Samuel, handsome and smiling, does what most teenagers do — texts on his cellphone.

Samuel makes his way to the leather sectional sofa in the living room. He plops down as if exasperated and reaches toward the button to recline his seat. Before he can press it, Zachary walks over, drops his crutches to the floor and reaches to his big brother for a hug. The two embrace in a cross between a hug and a wrestling hold. Moments later, Ethan runs over and piles on top of his brothers. Laughter erupts and their mother looks on, shaking her head as if to say “somebody’s going to get hurt.”

Julie calls her family to the table for dinner. Zachary, who uses a wheelchair outside of the home, leaves his crutches to the side of the table and uses his upper body strength to shimmy to his regular spot, on a bench beside Ethan. The family bows their heads as Ethan prays.

“Dear Lord, thank you for the food we’re about to eat. Thank you for keeping us safe and please help anyone who’s hurt or sick or anything like that. Thank you for everything, amen.”

After dinner, Samuel makes his way up the stairs to his bedroom. His gait is distinct as he sways left to right. The family refers to it as the “spina bifida swagger.”

His room is royal blue with red accents and sports relics on display. There’s a picture of Babe Ruth, baseballs signed by former Braves players and trophies and medals for wheelchair basketball. He and Zachary both play for BlazeSports. Samuel received the Positive Athlete of Georgia Award in the adaptive athlete category this fall. In the corner are the new adaptable snow skis he got for Christmas.

Beside the bed is Samuel’s Bible. Inside the black and blue leather cover is a date scrolled in his handwriting: June 20, 2007, the day he was saved. Samuel’s faith plays a big role in how he copes with his condition.

“I feel like I make strong decisions because I’m strong in God,” said Samuel. “I think that’s important with having a disability. I realize how bad it could’ve been, and I know how much he’s blessed me. Without spina bifida, I wouldn’t know so many of the people I know today and I wouldn’t have wheelchair basketball, which has completely changed who I am. You may think of spina bifida as a disadvantage, but I thank God for it every day.”

Samuel celebrated his 16th birthday in December. He and his friend Greta hosted a joint party with about 35 friends, a DJ and a bonfire. He doesn’t have his license yet, but he has his learner’s permit. He drives to church and to his grandparents’ house often. In his free time he goes to the movies with his friends and shoots hoops in his driveway. Though he stays busy, he’s open to having a girlfriend — he’s just waiting for the right one.

Samuel’s a sophomore now, but he already has his sights set on earning a scholarship to a major college for wheelchair basketball. He practices with his team every Saturday at the Shepherd Center in Atlanta. He flies up and down the court in his chair, making passes and practicing free throws. He loves the speed of the game and the excitement that rushes over him when he makes a shot. He thrives in big games, and has won a few for the team in the very last seconds. Samuel treasures those moments when he gets the ball, releases it from his hands, scores as the buzzer sounds and the crowd jumps to its feet, cheering for Samuel — a boy determined to make his dreams come true.

Behind
the story


ABOUT THE STORY
My family and the Armas family attend the same church in Douglas County. I’ve always been impressed by them – their friendliness, openness, faith and seemingly boundless energy. I marvel at how they not only manage as a “two wheelchair” household, but how they thrive. When I learned that Samuel was the child in the famous Hand of Hope photo, I knew that we needed to tell his Personal Journey. Writer Keri Janton has perfectly captured his story and shows what an impressive young man he’s become.

Holly Steel
Section editor, Living & Arts
personaljourneys@ajc.com


ABOUT THE REPORTER

Keri Janton is a freelance writer and family photographer. Her favorite job, however, is being a stay-at-home mom to her two sons, whom she is raising in Sugar Hill with her husband, Dan. She loves to write children’s books in her spare time and journals about family life in a private blog she has maintained for four years.

ABOUT THE PHOTOGRAPHER

Hyosub Shin was born and raised in South Korea. Inspired by the work of National Geographic photographers, he came to the United States to study photography and joined the AJC photo staff in 2007. Past assignments include the Georgia Legislative session, Atlanta Dream’s Eastern Conference title game, the Atlanta Air Show and the Atlanta Braves’ National League Division Series.