Little girl, big journey
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(Editor's note: Bedica Ermilus died May 17, just days after returning home to Haiti, likely from disease common in that nation. Ginny Ryan, M.D., an obstetrician/gynecologist at University of Iowa Hospitals and Clinics, said cholera, a disease that is endemic in Haiti, may be the cause of the infant’s death, but there’s been no real diagnosis. A memorial for Bedica has been planned in Iowa City; read more here.)
Little Bedica Ermilus may never know of all of the people who came together and worked hard to bring her to University of Iowa Children’s Hospital for a surgery that would save her life but it’s a sure bet they’ll never forget her.
The tiny four-month-old girl was born in December 2011 with anal atresia, a condition that blocked her ability to move her bowels. Though she could release a small amount of waste, the anal opening wasn’t in its proper place and the waste released wasn’t enough to let her survive for long. What’s worse, the medical team in Haiti lacked the proper surgical equipment and follow-up care, and the rate of recovery there was near zero.
So Bedica’s mother, Carole Charles, made a bold plea for help—a plea that set in motion a plan involving Iowa state and federal legislators, national news media, the Clinton/Bush Fund, and doctors and residents in Illinois and Iowa, all working to get the infant the surgery and care she needed.
The journey begins
Matt Downen, a senior medical student at the University of Iowa Carver College of Medicine, was on a three-month medical visit in Haiti in February as part of his work with Community Health Initiative, a health initiative started in Haiti by UI emergency doctor Chris Buresh and Josh White, an emergency doctor in the Twin Cities. Part of his job there was to do community surveys—visit different communities regularly to see what medical needs the residents had.
“We’d walk through neighborhoods and people would see I was white and assume I was a doctor,” Downen says. “They would just bring their kids up to me to help them.”
That’s precisely how he met Carole Charles, he says. Downen was walking with a translator near the tiny town of Arcahaie when Charles brought Bedica to him and immediately turned her over and started to remove her diaper. Downen took Bedica to a nearby clinic; with Dr. Angie Kerchner, a UI graduate and family practice resident in the Quad Cities, he diagnosed the baby’s condition. They then called seeking the advice of Dr. Chris Buresh, a University of Iowa Hospitals and Clinics emergency department doctor who has worked for years to establish medical clinics in rural Haiti.
“We had to instruct Carole not to feed her anything but breast milk—that’s the only thing her body would be able to handle—and then we started pursuing all avenues to see how we could get this baby the surgery she needed.”
Anal atresia is not an uncommon defect—about one in every 3,000 babies is born with the condition. In ideal settings, such as the United States, the anal opening is placed where it should be, babies are given the follow-up care they need, and are able to live normal, healthy lives. In areas such as Haiti, where the follow-up care isn’t as precise or regular, babies seldom live long with the condition, even after surgery.
Downen visited with various surgical clinics in Haiti and found similar answers at each one: either the surgery wasn’t performed or it never met with satisfactory results.
“Basically they all said, ‘If you want her to live, you’re going to have to get a surgical team from the United States here or take her to the states,’” Downen says.
No easy task
While trying to figure the logistics of bringing a surgical team to Haiti, Downen also worked the other option, getting Bedica to the United States.
“We tried to have multiple irons in the fire until we got something that worked and at this point I started the paperwork to get her a visa,” Downen says. That was two weeks before he was scheduled to return to the United States and to Iowa.
“We hadn’t done a lot of this before so we tried to talk to as many people as we could,” Downen says. He was making contact with people at the state level in Iowa as well as the federal level, hoping to find the help they needed. “They gave us some information and direction to getting her a visa, and we tried to go about getting everything we needed.”
On his last day in Haiti Downen had an appointment at the U.S. Embassy to finalize the paperwork and get Bedica’s visa granted. Once he arrived, however, he learned the team responsible for that approval had already left.
Phone calls to Buresh and Buresh’s wife, Dr. Ginny Ryan, a UI Hospitals and Clinics obstetrician, immediately followed and Ryan made plans to fly to Haiti to finish the paperwork and bring Bedica to Iowa.
“She had to go through two days of paperwork, find mystery documents, and make return trips to the embassy to get it all done,” Downen says.
A few days later, on March 15, Ryan and Bedica were on their way to Iowa.
Buresh and Ryan became medical guardians for Bedica and cared for her in their home. The infant was taken immediately to Dr. Graeme Pitcher, a pediatric surgeon at UI Children’s Hospital who would be doing Bedica’s surgery.
“At first she wasn’t well enough to do the surgery,” Buresh says. She was underweight and malnourished, and needed to be strengthened. Although the surgery wasn’t unusual—Pitcher says he’s done about 10 of them since he’s been in Iowa—the tiny girl still needed to gain some weight and get some vitamins.
Buresh said Charles was able to feed her daughter only about four ounces of breast milk a day. Using donated breast milk, Buresh and Ryan were able to get Bedica the nourishment she needed.
“She really started to perk up in the first 24 to 36 hours,” Buresh says.
Within two weeks she was ready for surgery, and the two-hour procedure was done March 29. Pitcher says Bedica is making great progress and should live a normal life.
Bedica was born with a “flat, featureless bottom where the anus should be,” Pitcher says, and that the anal opening was actually located in the back of the vaginal opening, and was much smaller than it should have been.
Pitcher says that while many may not have heard of the surgery, it’s not that uncommon or even extraordinary.
“We have done hundreds of these operations in the United States so it’s nothing extraordinary from the pediatric surgery point of view,” he says. “It’s fairly a straightforward procedure, but she needed to fall under the treatment of a pediatric surgeon.”
Within days of her surgery, Bedica was still gaining weight, eating about 32 ounces of breast milk a day. Pitcher says her anatomy has been corrected and her prognosis is “excellent.” She’ll likely return to Haiti later this month.
“The thing I really like about this is just how many people really put their heart and souls into getting this put together,” Buresh says. “A lot of people were really willing to bend over backwards to help a kid most of them will never meet.”