Vickroy: Henry’s legacy: Tiny toddler’s light shines on
By Donna Vickroy firstname.lastname@example.org Twitter: @dvickroy December 7, 2012 6:30PM
Updated: January 10, 2013 6:10AM
This is the story of a little boy who was born in the middle of nowhere. Tiny Henry Dobrovits never spoke a word and never took a step, yet he managed to win the hearts of a special Frankfort family and just about everyone who met him.
Henry was just 2 when he passed away Nov. 28. But to his adoptive parents and siblings, his spirit lives on, larger than life.
They see it in the kindness of those who’ve expressed condolences, in the compassion of those who work with special-needs children. They see it in themselves.
“We were so lucky to spend 14 months with him,” said Carla Dobrovits, who was with Henry when he succumbed to complications from an infection at Lurie Children’s Hospital of Chicago. “He taught all of us that every single life matters.”
Born Sept. 24, 2010, in Kirovograd, Ukraine, Henry immediately was relinquished by his birth mother and doomed to spend his early months in a metal crib inside an orphanage. He’d been diagnosed with arthrogryposis, and while the diagnosis was incorrect, it was a stroke of luck for the infant whose limbs flopped like noodles and whose spine was twisted like a winding mountain road.
Had his real condition been detected, he would not have made Ukraine’s list of adoptable babies. Being on that list got his photo featured on the website for Reece’s Rainbow, a database for people interested in adopting special-needs children around the world.
That’s where Carla first spied him in January 2011.
It was a new year, and she’d made a decision to spend 2011 helping orphans.
She planned on making a donation to their care. But once she saw the photo of Henry, clad in footed pajamas, sucking a blue pacifier, this mother of six had a crazy thought.
First, she prayed that someone would adopt him. After a week and a half, she realized her prayers were answered. She put together a presentation about international adoption, about Henry, about why she wanted to make her family’s complicated life even more complex, and presented it to her husband, Paul.
Carla and Paul are lawyers. She has a real estate practice with her father in Evergreen Park. After a stint in the Navy, Paul now is an FBI agent.
“Paul thought I’d lost my mind,” she said. At the time, their oldest son was a senior in high school. Their second was a junior. College loomed large.
It took Paul the month of February to come around to the idea of having another child, but once he did, the entire extended family joined forces to raise the $25,000 adoption fee.
In August, they flew to eastern Europe to meet their son.
At the orphanage, a worker suggested they see Henry before filing for adoption. He was very sick and they might change their minds.
“We said, ‘No thanks, we’re 100 percent sure we want to take him,’ ” Carla said.
Indeed, Carla took one look at Henry and knew he was her baby.
“Wild horses couldn’t have pulled me away,” she said.
Carla and Paul learned a lot about Henry during their daily visits to the orphanage while they waited for the paperwork to clear.
He had been back and forth to the hospital many times. He’d had pneumonia, chickenpox, bronchitis. His airway was the size of a juicebox straw. It took him hours to eat a few ounces.
They also learned that he’d never had a visitor, never been read to and never played with a toy.
He had just laid in a crib all day.
“They didn’t even hold him,” Carla said. The lack of stimulus was so severe that Henry would sometimes hit himself in the head repeatedly until he fell asleep.
When they brought him back to Frankfort, the 1-year-old weighed 12 pounds and wore a size 3-6 months.
The Dobrovitses spent the first six weeks treating Henry’s malnutrition and its various complications.
That resolved, Carla took him to an orthopedic doctor, hoping to begin treatment for arthrogryposis. Then she learned Henry didn’t have arthrogryposis.
Tests revealed Henry had a rare genetic disorder known as Larsen’s syndrome. That explained the flexible limbs and twisted spine, which caused breathing and eating issues. If not treated, his spine would progressively compress his lungs. His condition was deemed “not compatible with life,” Carla said.
The family traveled to Children’s Hospital of Philadelphia, where a special procedure to implant rods into the spine was performed on Nov. 1.
“The surgery went great,” Carla said.
Henry came home on the 15th and everything was good.
“We had the most fabulous week,” Carla said. “He grew 2 inches in that time.”
Within a day of being home, Henry learned to roll, and proceeded to roll everywhere, opening cabinets and grabbing bowls.
She has video of him rolling, of him playing with toys and his siblings, of him clapping for himself at his newly learned feats.
Then the joy turned to terror. The day before Thanksgiving, Henry began running a fever. By Friday, he was in so much pain that the Dobrovitses brought him back to Lurie.
During his year in Ukraine, Henry had contracted MRSA, a staph infection that is resistant to treatment. He had tested positive for it in Ukraine but did not have symptoms until after the back surgery.
On Nov. 28, Henry took a turn for the worse.
He coded. Staff was able to revive him long enough for Carla to say goodbye. As she was talking to her sedated baby, telling him what a silly boy he was to give her such a scare, he coded again. She was shooed from the room.
At 3:30, when they let her back in, she grabbed his finger — something he liked to do to her. It was cold.
Henry was buried Dec. 1.
Now the family wrestles to fill the enormous void. Thankfully, Carla said, each member has a special memory of Henry.
Ella, 8, taught him to use his pointer finger. Luke, 18, showed him how to thrust his tongue so that one day he’d be able to speak. Logan, 6, made him laugh hysterically. Sabrina, 13, was among the few he’d take a bottle from. Tessa, 3, taught him how to play with toys. Brent, 20, a student at Joliet Junior College, now wants to be a special-education teacher.
And Carla and Paul know of six families that they have directly influenced to adopt a special-needs child.
“Henry brought so much love to our family,” Carla said. “I want people to know they shouldn’t be afraid to adopt children with disabilities. They are wonderful.”
You can read about Carla’s experiences on her blog, bringinghenryhome.blogspot.com.