Successful parenting often relies on a good dose of common sense, mixed with plenty of patience, steadfast perseverance and unending love. In Air Force Master Sgt. Jason Vitaliano’s world, these traits are not only present, but abundant and at the forefront of the critical decisions he makes for his son Spence. And there have had to be a lot of decisions.
A little more than six years ago at Kadena Air Base in Okinawa, Japan, Jason and his wife Raquel were awaiting the arrival of their first child. Their son, Spence, arrived early by emergency cesarean section when his mother experienced complications 26 weeks into her pregnancy. When Spence was born he weighed just 1 pound, 11 ounces. Jason recalls it was just three days before Christmas.
Life was a challenge right from the start. Spence was put on a ventilator to help him breathe. He suffered a grade III intraventricular hemorrhage that damaged areas of his brain and caused cerebral palsy. The doctors couldn’t figure out why his body could not manage sodium levels, necessitating drawing blood every three hours around the clock. He suffered retinopathy of prematurity, where abnormal blood vessels can lead to retinal detachment in eyes. Needing a higher level of care, 1-month-old Spence was air-evacuated in an incubator along with a medical team across the Pacific Ocean to Tripler Army Medical Center in Hawaii.
There, doctors performed laser eye surgery. Spence still had unsolved medical issues, though, and Jason began to research Air Force bases with nearby medical facilities that could provide specialists for Spence. Through his own research and advice from EFMP, he learned that Arkansas Children’s Hospital near Little Rock Air Force Base might be the answer. Again they air-evacuated Spence to a waiting ambulance, this time in Little Rock, Ark. By the time he was just 5 1/2 months old, Spence had been in three hospitals and traveled a third of the globe.
The doctors at Arkansas Children’s Hospital were able to identify some of Spence’s critical medical issues and stabilize him. They put a shunt in his brain to relieve the pressure from fluid build-up. They discovered his sodium imbalance resulted from a rare disease called diabetes insipidus, which can cause dehydration. They figured out how to artificially control his body temperature since Spence’s brain injuries prevented his body from regulating its own temperature.
With a vigorous medication schedule and intervention required every three hours, Jason admitted that their lives became “very, very stressful.” All the while, as an instructor flight engineer, Jason needed crew rest so he could fly. He was removed from flying status several times due to severe sleep deprivation.
The more doctors learned about Spence’s medical issues, the more Jason realized that he needed specialists and services that were not available in Little Rock, Ark. Once again, he got to work. He consulted a dozen of Spence’s civilian medical specialists, getting a letter from each that detailed their role in Spence’s care. Then he put in a package to relocate to Joint Base McGuire-Dix-Lakehurst, N.J., where he hoped Spence could be seen by specialists at the Children’s Hospital of Philadelphia, about an hour away. However, when his relocation package was initially denied he reached out to his flight surgeon for help, and after two teleconferences, Jason’s request was granted.
The challenges continue to this day. “It never stops,” says Jason. “You have to be the one who’s constantly researching, constantly asking questions, networking and speaking with people … because in our situation our kid can’t advocate for himself.”
He has found there are caring, helpful people in the special needs community, and he champions the Internet as a way to connect with organizations and individuals offering advice and information.
When he was unable to find skilled nursing support, he reached out online to Specialized Training of Military Parents. Their ListServ offered a way for him to ask other people for advice. One of the responses he received was from Isabel Hodge, a Program Analyst from the DoD Office of Special Needs. She set a lot of gears in motion, and within hours Jason received approval for much-needed nursing services. He also was able to attend a one-week STOMP workshop in Seattle, which was “one of the most informative experiences I have had as far as special needs.” He stresses that families should never be afraid to ask for help and encourages them to explore options within their state as well.
The Vitalianos have been stationed at Joint Base McGuire-Dix-Lakehurst for five years. Spence is 6 years old now and attends a special needs school that has helped him to make important progress. Before Spence went to school, he could not handle the noise of a sneeze. Going to school with other kids and noises has helped him overcome that. He wears a special vest/suit that helps to keep his body more rigid. By wearing it at school all day, it causes his body to get used to the way he’s supposed to sit and when he is at home, he sometimes sits upright. Spence has adapted to the busy environment his dynamic teacher provides. He used to fall asleep often, especially when stressed, but now he stays awake at school all day. He is stimulated by the constant activity, especially enjoying the computer, the sensory room and story time. Jason says Spence is also a big fan of the pool at school. He wears an adaptable life preserver and gets the special attention of the school’s former principal, who comes back to be his swim buddy on swim day.
“Yes,” says Jason, “Spence is a popular guy at school!”
Raquel and Jason also have a beautiful daughter named Chloe, who is 2 years old now. Chloe loves to give kisses and bring toys to Spence. Jason believes Chloe is privileged to grow up with Spence because she will never be a child who is afraid of people with disabilities. She understands that children can be different. Jason says Chloe has added the variety that they needed to their life.
Jason saves the greatest praise for his wife Raquel, “I’m quite lucky to have a wife who has really stepped up to the plate.” He marvels at how she handles everything: running the day-to-day needs of the house, as well as caring for their children, especially Spence. She manages to tend to the nursing agency, schedule appointments, coordinate with companies for medical supplies and keep to a rigorous schedule. He’s especially impressed because before Spence was born, Raquel, who is from the Philippines, had never been to the United States. After Spence’s birth, she became a U.S. citizen. She also had to learn how to drive, and now she drives Spence to his appointments in downtown Philadelphia. Jason said he encouraged and mentored her so she would learn how to handle their complicated life.
“I do a dangerous job,” said Jason. “I’ve always needed to know that my wife can be able to hold down the family if something tragic were to happen. It worked out because now she’s self-sufficient … She does an amazing job!”