VICENTE AND PARENTS
PHOTO BY RANDY BACON
VICENTE AND HIS PARENTS
“The List Was Endless”
(Story by Brittany, Vicente's mother)
It’s hard to imagine that one doctor’s appointment could completely break a person. But on October 22, 2016, my husband, Danny, and I walked into our first 22 week fetal ultrasound, happy and whole. We walked out shattered, lost and wholly broken, just like our baby boy. Our son was showing signs of shortened and bowed long bones of the arms and legs, despite the presence of any genetic abnormalities in either of our families. We were faced with many questions and potential diagnoses. In the span of a few hours, our life had forever changed and would never, ever be the same again.
Would our child be ok? What would his life expectancy be? Would he be able to do what other children can do? Would he live a “normal” life? The list was endless.
We spent 5 weeks waiting and mourning over several frightening diagnoses with a growing list of things our son was predicted he would never be able to do. We experienced immense relief when we discovered Vin had Osteogenesis Imperfecta (OI), the diagnosis allowed our attention to be turned to trying to do everything we could to prepare and give Vin a full, and happy life.
Vicente came into this world premature with healing fractures and spent a week in the NICU. OI causes a person’s bones to be extremely fragile predisposing them to fractures for no apparent reason during daily tasks, such as a handshake, a diaper change, or a sneeze. In our experience, Vin has broken bones from getting caught in a blanket. People living with osteogenesis imperfecta can also suffer from other health issues such as hearing loss, brittle teeth, spine issues, bone deformities, and pulmonary complications. It is a lifelong disease with no cure. However, individuals with OI can still live long and productive lives with the help of assistive mobility devices, biophosphonate infusions and rodding surgeries.
Vin has experienced 10 fractures to date and has had rods surgically placed in his femurs to allow for potential weight bearing and walking. At 3 months of age, Vin underwent a hernia repair and at 7 months had a port placed to receive infusions, which we call bone juice, every 8 weeks. We do weekly water therapy to strengthen muscles and promote mobility; and once a year we travel to see a team of specialists in Omaha, Nebraska who follow his overall growth, development, and perform specialty surgeries.