Under their wing

Parents of children with complicated conditions guide others

under_their_wing_portrait Spring 2016

Michele Ashland’s daughter was just a month old when Ashland learned in a phone call from her pediatrician that her newborn suffered from a life-threatening liver disease and might need a transplant to survive. She brought her ailing child to Lucile Packard Children’s Hospital Stanford for the transplant, feeling overwhelmed.

“I landed here knowing nothing about liver disease, transplantation or hospitals,” says Ashland, now a Stanford Children’s employee. “I just thought the worst. I wondered, ‘Am I signing her up for a lifetime of being in the hospital?’ You feel so alone.”

With help from the health-care team, Ashland taught herself about transplants and learned how to navigate the medical and insurance systems, manage her daughter’s rigorous schedule of anti-rejection drugs and keep her safe from marauding pathogens, which can easily defeat transplant patients.

Four years after the 1995 procedure, Karen Wayman, PhD, the developmental specialist on the liver team, asked Ashland and other parents for feedback on the transplant process and ways to better support families of transplant recipients. That marked the start of the parent mentor program at the children’s hospital, in which experienced parents offer care-management strategies, as well as a shoulder to cry on, to parents of youngsters newly diagnosed with devastating medical conditions.

The program, the first of its kind in the country, now includes 15 trained parent mentors, who are paid for their work and are essential members of the health-care team, says social worker Lindsey Martins, who oversees the program.

The mentors, some of whom are fluent in Spanish, offer emotional and practical support to parents of children with cancer, heart disease, cystic fibrosis, diabetes, gastrointestinal disorders and other complex medical conditions, as well as those with infants in the neonatal intensive care unit. In addition to face-to-face interactions with families, the mentors helped develop guides, available in print or online, with tips on relevant issues, such as managing insurance and organizing a child’s treatment and medication schedule.

“I used to think of the program as icing on the cake, but now I think it’s not just icing — something extra — because how you manage things as a parent can really make a difference in your child’s life,” says Ashland, whose daughter is now a thriving college junior.

“When I approach families, I tell them I’m a parent and that they can talk to me,” says parent mentor Teresa Jurado, whose 26-year-old son has cerebral palsy. “You see their whole face change. It seems like they relax and let down their guard. They don’t have to pretend they have it all together.”

Angelica Marin, a mother of three from Lathrop, California, says she was struggling to take care of her daughter, 7-year-old Valeria, who was born with a disability that restricts her ability to walk, speak and feed herself. Ashland and Jurado both helped her with the process of securing a wheelchair, set up appointments with the child’s dozen or so specialists and arranged for a Spanish interpreter at a time when Marin was still learning English.

“I don’t have words to explain just how much they have helped me,” she says. “You feel so lost and are afraid of everything. I learned that I’m not alone.

“One piece of advice I always remember is they told me, ‘Never give up. There is always a door open for you.’”

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Ruthann Richter

Ruthann Richter is a freelance science writer. Contact her at medmag@stanford.edu

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