Steven Nguyen knows the challenges of growing up in a wheelchair – the isolation of being unique, the pain of bullying from other kids for being different, the desire to be like other children, the struggles to get from one place to another when a path is blocked or too narrow, or to reach something too high or low.
The 23-year-old Marrero native has experienced enough tribulations that he could be intensely insular. Yet, in February, Nguyen was recognized with the Ryan Colburn Scholarship by the Association of Maternal and Child Health Programs(AMCHP) for outstanding leadership in the field of Maternal and Child Health (MCH) in his work as youth liaison at the Children’s Special Health Services (CSHS) Family Resource Center at Children’s Hospital in New Orleans.
Nguyen was born with spina bifida, a birth defect involving incomplete closure of the spinal column when the baby is in the womb. It is the most common permanently disabling birth defect in the United States, affecting one per 1,000 live births. Each day, about eight American babies are born with it or a similar birth defect of the brain and spine. While no one is sure of its cause, children and young adults with spina bifida often have mental, social and physical problems, including walking and getting around, going to the bathroom, latex allergy, obesity, skin breakdown (bed sores), gastrointestinal disorders, learning disabilities, depression, tendonitis and sexual issues.
Since September, Nguyen has been serving in a mentoring capacity, working with patients that go through Children’s Hospital Rehabilitation Program. He assists inpatients and their families with an accessibility survey, which helps medical staff determine and help improve a child’s capabilities so they may become as independent as possible. He also provides information about resources available throughout the state, so patient families will know how to access the help they need when they go home.
"Having a disability, especially an acquired disability, is tough,” Nguyen said. "It makes you think a lot different from somebody who is able bodied. But a proper support staff can really make a difference in reducing frustrations and making life easier.”
Currently, there are more than 207,000 Louisiana children who have special healthcare needs. That’s about one in five of the state’s kids.
"The last national survey for families of children with special healthcare needs showed that 35 percent of families in Louisiana having a child with a special healthcare need had problems learning about and
accessing needed community resources,” said Betsey Snider, RN, nurse coordinator of the Family Resource Center, the principle public agency ensuring these kids have access to healthcare services designed to minimize their disabilities and maximize their probabilities of enjoying independent and self-sufficient lives.
"Steven shows these kids and their parents that in order to be successful they need to be able to speak up and advocate for themselves,” Snider said. "But I’m not only seeing him do that with kids in the hospital.
He’s reaching out to kids that he grew up with, kids that maybe weren’t as successful as he’s been; and he’s telling them about agencies that can help them get into college or vocational school.
"Sometimes these kids fall through the cracks. He’s a role model,” she said. "He’s providing encouragement and motivating them.”
Children’s Hospital Neurosurgeon Joseph Nadell, co-director of the Rehabilitation Program and Nguyen’s physician for 21 years, said he tries to encourage his spina bifida patients to excel academically in spite of their physical limitations.
"Sometimes these kids feel this disability can prevent them from achieving success, so you have to constantly motivate them,” Nadell said.
"Steven is more effective in that aspect than I because he’s one of them. He’s been successful and will continue to succeed.
"He’s quiet and soft spoken, but he gets things done. He has a way of getting people to do things they didn’t expect that they could. When he speaks, people listen.”
Physical Therapy director Anna Smith said Nguyen has brought a different perspective, which has changed some of her department’s practices.
"He knows what it’s like not to be able to get around,” Smith said. "He’s a great communicator, and doing a terrific job helping the hospital and the patients we serve by letting us know how we can make the patient experience better.”
Lee Myers, Child Life director, said he is able to help medical staff eliminate medical jargon from their discussions with patient families so that it makes sense to the general public. "He lets us know what is family-friendly and what’s not and helps us to change it to make it easy to understand.”
The Ryan Colburn Scholarship is given nationally to one youth who has demonstrated leadership in public or community service activities and was a recipient of services made possible through the Title V- Maternal and Child Health Services Block Grant Program. Preference is given to individuals who have demonstrated active participation as youth leaders in the disability community. It allows one youth with special healthcare needs the opportunity to attend the annual AMCHP conference in Washington, D.C.
Enacted in 1935 as a part of the Social Security Act, the Title V Maternal and Child Health Program is the nation’s oldest federal-state partnership. For more than 75 years, the program has provided a foundation for ensuring the health of the nation’s mothers, women, children and youth, including children with special needs and their families. Title V funds have enabled Nguyen and other children to access much needed subspecialty care through Children’s Special Health Services clinics across the state.
As a conference attendee, Nguyen had the opportunity tonetwork with healthcare professionals, parent advocates and youth leaders from the state and national levels to learn about different MCH care and advancements and bring back to New Orleans the best practices for children and youth with special healthcare needs.
While in the capital, Nguyen met with Senators Mary Landrieu and David Vitter to discuss services funded through the MCH Block Grant, his involvement with MCH and how the program has helped him become the person that he is today.
When Nguyen isn’t working at Children’s, he can be found playing basketball and giving back in other ways. He is a board member of Spina Bifida of Greater New Orleans and an active participant in Champions of Greater New Orleans support group, which encourages social interaction for children with disabilities and their families. In addition, he is enrolled at Delgado Community College, pursing a degree in computer information technology.
"This whole experience was definitely one that I will cherish for the rest of my life, and I am humbled to have been given this opportunity,” Nguyen said. "My ultimate goal in life is to inspire other youth with special healthcare needs to work hard and be the best that they can be, despite the many obstacles that they will have
to overcome in life.
"I’ve fallen out of my chair many times. If you’ve never needed help, you don’t understand the feelings of helplessness that comes along with it,” he said. "I know there are a lot of people out there who need help. I want to be there to help them when they need it.”