Like Lewis and Clark, Holmes and Watson or even Batman and Robin, Russell Jennings, MD, and Lori McGahan are an amazing team. Working together as doctor and parent advocate, Jennings and McGahan have done tremendous work raising awareness and funds for esophageal atresia/tracheo-esophageal fistula (EA/TEF), a rare congenital birth defect affecting one in every 4,000 births. Without correction, EA/TEF makes swallowing impossible, complicates breathing and makes gastric reflux and aspiration even more hazardous. The collaboration of Dr. Jennings and Lori epitomizes the change that can occur when parents and doctors work closely and demonstrates how social media can be an amazing tool for spreading factual medical information.
Jennings and the McGahans first met four years ago, when their son Brandon was admitted to Children’s Hospital Boston after being born prematurely with EA/TEF. Jennings was able to save young Brandon’s life, but his relationship with the McGahans didn’t end when they left his office. Since 2007, Lori and Dr. Jennings have worked side by side to raise funds for EA/TEF research and organize online support groups for families affected by the condition.
“When Brandon was born there was very little information about EA/TEF available to us. We searched the Internet for hours but came up with very little,” says Lori. “We felt so alone.”
Rather than wallow in fear, Lori and her husband, Brian, turned their uncertainty into action and made it their mission to educate themselves and others about EA/TEF. With Jennings’ help the McGahans have been researching the condition and have used their newfound knowledge to co-create, with Children’s, a very active EA/TEF Facebook page and start Bridging the Gap a support and education group for parents of children with the condition. The collaboration taught Lori and Brian plenty, but Jennings says he’s learned a great deal from the McGahans as well. “Understanding the patient and family experience is a key part of medical education,” he says. “In this sense the McGahans have been awesome mentors to me.”
Jennings also notes that by working closely with Lori and mothers like her online, he’s had the opportunity to connect with families in ways he never knew were possible. “The EA/TEF community has been very savvy in asking questions from professionals and sharing creditable information with one another,” he says. “In doing so they are pushing treatment forward and contributing to the body of knowledge on this condition. Without a two-way street between families and physicians, we are left with the status quo. Personally, I’ve never been satisfied by that, and I know Lori and parents like her aren’t either.”
“Understanding the patient and family experience is a key part of medical education. In this sense the McGahans have been awesome mentors to me.”
This multi-tiered approach to EA/TEF education and treatment goes beyond the relationship between parents and their children’s physician; it extends to the entire Children’s staff. To provide the best care available for EA/TEF patients, Children’s surgeons, gastroenterologists, pulmonologists, otolaryngologists, radiologists and nutritionists all work together to support the healthy development of kids with the condition. And like their role in promoting EA/TEF education, Jennings credits the McGahans with helping him better understand the communal aspect of EA/TEF treatment. “Children’s was an early adopter of multidisciplinary care, but nothing beats the passion of a patient family to spur discussion and creativity between specialists,” he says. “When working with someone as dedicated and driven as Lori, ‘What can I do for Brandon?’ quickly morphs into ‘What can we do for Brandon?’”
And while their education and support efforts have far exceeded their original expectations, the McGahans and Dr. Jennings are far from finished. Even though it’s only been active for a few months, Bridging the Gap already has chapters in 25 states and aims to expand nationwide. Locally, the organization is planning a group picnic this spring, so families of children with EA/TEF can get together for food and fun with others whose shared battles with a rare disease makes a sunny day in the park that much sweeter.
“It’s amazing for EA/TEF parents to connect face to face, but it’s also really important that children with this condition meet each other,” says Lori. “There is nothing more rewarding for a sick child than to meet someone else who has been through the same experience. If they can make the connection that they’re not alone in dealing with these issues, then I feel like we’ve done our job.”
Want to learn more? Please visit the following four websites to connect with doctors, parents and patients affected by EA/TEF.