A decade ago, the late Seattle Children’s surgeon, Dr. Richard Grady, began traveling to India for a special mission — to provide urgent surgical care to children born with a rare and complex disorder called(BE).
Grady’s dedication to helping under-resourced children in India led to the development of a unique international collaborative that aimed to alleviate the global burden of this surgically treatable disease, as documented in a recent article published in JAMA Surgery.
Dr. Paul Merguerian, division chief of at Seattle Children’s, who is helping to carry on Grady’s inspirational work, recalls his colleague’s passionate commitment to care for children not only in the Pacific Northwest region, but in a country located more than 7,000 miles across the globe.
“For two weeks every January, he would travel to India to teach surgeons at Civil Hospital, a public hospital located in the city of Ahmedabad, how to perform complex BE surgeries,” said Merguerian. “The surgeons were given the opportunity to learn the same techniques that are used in the U.S. to help increase surgical efficacy and produce successful patient outcomes in a country where it’s needed most.”
An innovative collaboration improves patient outcomes
The incidence of BE is rare and estimated at 1 in 50,000 live births worldwide. Although the number of infants born with BE in India is currently unknown due to the challenges of tracking millions of births that occur per year in a country inhabited by 1.2 billion citizens, it has been estimated that 500 infants were born with the disorder in India in 2013.
Children with BE are born with a bladder that is not formed correctly. In most cases, the bladder and genitals are split in half, turned inside out and sit outside of the body. The skin and muscles of the lower belly or abdominal wall don’t cover the bladder and hold it inside. The front of the pubic bone in the pelvis may be wide apart. Without surgical intervention, children face the risk of serious infections and cancer, along with psychosocial complications.
However, in less developed countries like India, it was evident to Grady that there was a lack of access to specialized surgical knowledge required to treat BE.
In response to this need, Grady helped to form an international collaborative involving Seattle Children’s, Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital and Sidra Medicine in the State of Qatar to provide training and surgical resources in India. In order to determine the impact the training was having on patient outcomes, the collaborative conducted a prospective, observational study between January 2009 and January 2015.
In addition to successfully improving surgical outcomes, the collaborative found that 76% of patients who underwent complete primary repair of BE during the study returned for an annual follow up in 2016, which is a critical step in postoperative care for BE patients.
“It was remarkable to find that by sharing training and resources with surgeons and patients at the hospital in India, surgical outcomes in treating BE greatly improved and became comparable with those in developed countries,” said Merguerian.
In finding success through the collaborative, other countries are now turning toward Merguerian and his colleagues to help improve treatment of BE.
“This unique surgical mission model that was established is now being recognized by other countries,” said Merguerian. “In January of this year, we celebrated 10 years of collaboration and had observers from China, Germany, Uganda and Canada, among others, as we performed surgeries on about 15 children with BE.”
Although Grady’s presence was missing during the milestone occasion, his humanitarian spirit was felt by Merguerian and his colleagues.
“It was an incredible experience becoming part of this international team that’s creating such a meaningful impact in the world,” said Merguerian. “I’m also so honored and humbled by what has been achieved by Dr. Grady, who is deeply missed.”