Watching a child take their first steps is one of the many joys of parenting. Arms outstretched, staggering little feet, and a smile lighting up the child’s face as they travel a few inches across the room for the first time…priceless. But the Voelker family from Reading, Pennsylvania has witnessed this not once, but twice, with their 18-month-old son, Rex, who has spent more than three months of his little life immobilized due to a rare birth defect.
Rex, affectionately nicknamed “T-Rex,” was born in with classic bladder exstrophy and epispadius, a rare birth defect in which the bladder does not form properly and is exposed on the outside of the abdomen. This occurs about 1 in every 40,000 births and was a complete surprise to Kira and David, Rex’s parents.
At just two days old, Rex underwent surgery to repair and place his bladder back inside his tiny body. This was followed by four weeks of immobilization via traction, with Rex flat on his back and his feet suspended in the air to allow proper healing. After 43 grueling days of Rex’s parents not being able to pick up or cradle their newborn son, he was discharged from the hospital – an early Christmas present.
As he began strengthening his legs and learning to crawl and walk, Kira had a “mommy instinct” to get a second opinion on his condition, mostly for some peace of mind. They visited Dr. John Gearhart at the Johns Hopkins Children’s Center in Baltimore, Maryland – a leading surgeon for pediatric bladder exstrophy patients. It turned out that Kira’s mommy instinct was right – Rex’s surgery had failed; his bladder had not formed properly post-surgery, and his pelvic bones were also growing apart. Kira and David were devastated to learn that their fifteen-month-old son would have to undergo a second major surgery and be in the hospital for eight more weeks.
But they soon found some peace of mind – at the Believe In Tomorrow Children’s House at Johns Hopkins. Concerns of transportation to and from the hospital, meals, and figuring out how to occupy their older boys vanished as soon as Rex’s parents stepped through the front doors of the Believe In Tomorrow Children’s House.
“I didn’t get it until he was born,” said Kira. “I never in a million years really understood what these homes do for families like us. Until you have to use them and really benefit from them, you have absolutely no idea how amazing they are and how much they really help.”
Rex’s family set up their new home for the next three months while he underwent a second challenging surgery for both his bladder and pelvic bones, a second time being on his back in traction, and a second round of not being able to hug, snuggle, or play with his parents and brothers. But the Believe In Tomorrow Children’s House helped the Voelkers immensely.
“When the older boys came down to visit we could just focus on them,” said Kira. “Our focus for the last 18 months has been on Rex and I feel like I haven’t been able to give the other two what I would have, and that’s the most difficult part of it all.” With Kira’s mom keeping Rex company in the hospital, Kira and David could spend one-on-one time with their older boys, enjoying local activities like the aquarium, the circus, and even a Baltimore Orioles baseball game!
When it was time for the Voelkers to return home, Kira said the hardest part was leaving the staff and volunteers, who had become their new family and made their “home away from home” so special and comforting. But she soon had a reason to smile as little Rex started crawling, scooting around, and finally…WALKING! For the second time in two years, Rex has overcome unimaginable obstacles and is now laughing, playing, and dancing alongside his big brothers – a day that Kira and David have always dreamed of.