NICH Program Gives Parents of Medically-Complex Baby Wings to Fly

Novel Interventions in Children’s Healthcare (NICH) Program supports families of babies with chronic health needs

Xander, age 2, is all in when it comes to enjoying life. Instead of letting health challenges slow him down, he faces them head-on with spunk and determination. Just like everything else.

“He’s very sure of what he wants, and he has no problem telling us no. And he’s smart. I can have a full conversation with him already,” says his mom, Kirenia.

Maybe it was Xander’s challenging start that gave him the desire to direct his own life. He understands just how precious it is to feel good enough to play and have fun. For Xander, that means singing Elmo songs, playing with toy cars, and blowing bubbles. And of course snuggling with Mom and Dad under his Mickey Mouse blanket.

“He spent the first few months of his life at Stanford Medicine Children’s Health,” says Xander’s dad, Alejandro. “His heart problem was unexpected because we don’t have congenital heart disease in our family backgrounds.”

A cascade of health problems, starting with his heart

Xander’s heart didn’t grow well in the womb. The left side was small, along with one of his heart valves. As an infant, he needed heart surgery from Michael Ma, MD, at our world-renowned Betty Irene Moore Children’s Heart Center to help his heart perform better. Because the heart and lungs are very interconnected, Xander also had pulmonary hypertension, or high blood pressure in his lungs, demanding ongoing care from both heart and lung specialists, including Rachel Hopper, MD, with the Pulmonary Vascular Disease Program.

If that wasn’t enough, Xander also needed help—like many young heart patients do—keeping up with his developmental milestones and getting enough calories. It takes a lot of energy to maintain the body’s needs when the heart and lungs are not working well, and many infants with heart conditions can’t take in enough calories by mouth. That meant Xander needed to be tube-fed with what’s called a gastrostomy tube, or G-tube—a small flexible tube that passes down the nose into the stomach.  

On top of this, Xander had laryngomalacia, when the larynx (voice box) is floppy in infants. It would essentially fall down and partially block his airway. Tulio Valdez, MD, MSc, a pediatric otolaryngologist, performed a microscopic surgery called a supraglottoplasty (a simple airway surgery) to repair his larynx. Yet with laryngomalacia, many babies have problems with feeding and swallowing, which made Xander’s G-tube that much more necessary.

NICH program: An extra set of capable hands for medically complex kids

Xander’s heart, lungs, nutrition, and airway needs all added up to what doctors refer to as a medically complex situation, when a child has more than one ongoing health condition. It’s a lot for parents to manage on top of normal life demands, and Kirenia and Alejandro, who lived two hours away in Turlock, California, needed support. That support came in the form of the Novel Interventions in Children’s Healthcare (NICH) program at Stanford Medicine Children’s Health.  

“At discharge, our social worker referred us to NICH. That’s how we met Melissa Anderson, BS, our interventionist (personal advocate),” Kirenia says. “Managing his care was very hard at first. We had to use sick time and vacation time to get him to care appointments. We were super-busy working full-time, plus I was in nursing school at the time. Melissa was a great help.”

The Novel Interventions in Children’s Healthcare program supports Bay Area parents of children with a variety of complex and chronic conditions. The NICH team is made up of pediatric physicians, psychologists, social workers, and dedicated interventionists, all of whom work together to support families through their child’s care journey. 

“We engage families from a multidisciplinary approach to meet their comprehensive needs,” says Annie Diep, MSW, NICH program clinical supervisor. “Our Novel Interventions in Children’s Healthcare Program is innovative, flexible, collaborative, and an extension of an already extraordinary system filled with compassionate people who offer a higher level of care when traditional support just isn’t enough.”

Diep, a trained social worker, deeply understands the struggles that families who speak and read a different language, or have other barriers, face when it comes to managing chronic illness and complex care. Even simple tasks like filling out forms or scheduling appointments can become daunting. Novel Interventions in Children’s Healthcare helps families overcome these obstacles, known as social determinants of health—social and economic conditions that influence a family’s ability to thrive.

Each family in NICH is assigned an interventionist, like Anderson. She helped the couple understand Xander’s diagnoses, served as a liaison between all of his doctors and caregivers, coordinated with their local pediatric provider, and was simply there for them, no matter the need.

“Historically, pediatricians would go out to a child’s home,” says Diana Naranjo, PhD, clinical director for NICH. “By doing so, they wouldn’t just address the child’s chronic illness; they would also notice other ways to help, like seeing that a family was struggling with having enough food, or managing other children, or another family circumstance. The caregiver would be tuned in and able to provide thoughtful help and care, tailored to the family’s needs. This is what NICH does.”

Anderson was there 24/7 to coach the couple through health scares. Providing guidance after hours is crucial, since health emergencies aren’t confined to the normal business hours of 9 a.m. to 5 p.m. Inevitably, they happen on weekends or evenings when everyone in the clinic has gone home for the day.

“About two weeks after we brought Xander home from the hospital, I called her at 10 p.m. on a Saturday night, freaking out because his G-tube fell out,” Kirenia recalls. “We tried to put it back in his nose, but then he turned red and looked like he wasn’t breathing well. She advised us to call the operator on the care team, which I couldn’t remember in my moment of panic that there even was one.”

Anderson attended appointments, took notes, and reminded the family of upcoming appointments and doctor recommendations. She gave the couple strategies to organize appointments, including helping them set up virtual visits and appointments that were back-to-back so that they weren’t constantly taking time off from work and running back and forth. She also met them where it was convenient for them, such as at the doctor’s office and even making the long drive to their home.

“Kirenia and I would rotate on his appointments, and when I went to the first one on my own, I was nervous. I was worried that I would forget what the doctor said,” says Alejandro. “But Melissa was there taking notes, which made me feel better.”

Anderson really enjoyed working with the family. She says they have great parental instincts. “They asked great questions, and they are super-devoted to Xander. I got to go along to help them and to enhance the skills that they already had,” she says. “NICH is about noticing the things parents do well and replicating that, rather than focusing on what’s not working.”

The NICH program provides ongoing support free of charge to families of medically complex children who receive care at Stanford Medicine Children’s Health. Families spend up to a year in the program after discharge, thanks to grants and support from the community.  

“NICH builds confidence in a number of ways. Our interventionists model ways to engage with various medical teams, watch parents practice new skills, and act as a sounding board on how to tackle a task or medical concern,” says Rachel Bensen, MD, medical director of the NICH program.

A bright future with better health for Xander

The family recently completed their year of support with NICH, and they are feeling confident and armed to handle Xander’s ongoing health needs. As he grows, he keeps improving. Xander hasn’t been back to the emergency department or for a hospital stay once since starting NICH—a major victory.

“The NICH team has been a great support for the family, allowing for better care that has stayed on track, which helped him grow from a very sick newborn to a very happy toddler,” Dr. Valdez says.

Dr. Valdez believes that Xander’s swallowing skills have come a long way. He still has the G-tube for nutrition, but he drinks normally. As his swallowing mechanism continues to develop, the plan is to introduce food by mouth. His heart and lungs are performing better, too.

“His pulmonary hypertension was severe immediately after birth. With the surgery, and growth of his heart and lungs, it has improved significantly, such that we have been able to stop some of his cardiac medications,” Dr. Hopper says.

Even though managing Xander’s many needs is still a challenge for Kirenia and Alejandro, they have sprouted wings and they are ready to fly. They’ve got the skills they need to advocate for themselves and care for their son.

“They are a wonderful family. We had this great bond,” Anderson says. “It was an important year for them, and I will always carry Xander in my heart.”  

The feeling is mutual. The couple say they love Anderson and miss her. They’ve been tempted to call her, but instead they remember everything she taught them, recently finding a great solution to the formula shortage on their own.

“She always supported us and told us that we were doing a great job with Xander. It feels good to know we are doing OK,” Kirenia concludes.