An opened door: How one Cedar Rapids family helped a Haitian family in need of medical care
CEDAR RAPIDS — Earlier this month, a chain of events — a series of connections and of good will that stretched across years and miles — finally reached its culmination in Cedar Rapids.
Two patients made their way into the surgical wing of Mercy Medical Center in Cedar Rapids the morning of May 9, not unlike many patients coming for routine operations.
But the circumstances that brought 41-year-old Berthony Ceneliant and his 14-year old son Lens Wogger Ceneliant was beyond a typical patient’s journey to care. The day was much anticipated, particularly by the family of Steve and Sheila Scheib, who worked for nearly two years to get Berthony and Lens into that surgical wing.
The Ceneliants are from Marchand Dessalines, Haiti. Although caused by different conditions, both father and son had enlarged massed on their necks that they were unable to have removed at home.
Lens’s, which sat on his clavicle, just below his throat, was nearly the size of a baseball. It was caused by a congenital cyst that most likely has been growing since he was born.
“God opened a door for me.” - Berthony Ceneliant
It was uncomfortable, but the most unbearable aspect was the way other children would talk about it.
His father had a goiter caused by an enlarged thyroid gland, most likely due to an iodine deficiency. It had appeared sometime over the past three years, and had grown to the point that he had trouble swallowing or breathing at night.
Speaking through a Creole translator, Berthony told The Gazette he “had asked the doctors in Haiti if this was a surgery they could do, and they told him it really wasn’t. The kind of disease that it was, it’s not something he would want to risk doing in Haiti without adequate resources.”
Both father and son needed the growths removed as they would only continue to grow over the years, causing additional problems. But his family could never afford a trip to the United States for the procedures.
That is, until, Berthony said, “God opened a door for me.” And that door was Steve Scheib, 69-year-old Cedar Rapids resident.
Scheib “was the one who got them here,” said Scheib’s daughter, Kara Goslin.
In the 1970s, Don and Doris Peavey of Michigan moved to Dessalines, a commune about 85 miles from Port-au-Prince in Haiti that is home to about 120,000 people, according to estimations from 2003. They built Ebenezer Glenn Orphanage, a nonprofit organization to provide for hundreds of area children.
In the past 40 years, the orphanage has grown to include a church; a school, now educating children ages two to 18; a vocational workshop for the orphanage’s teenagers to learn skilled trades; and a medical clinic, open to those in the surrounding area.
Berthony was taken to the orphanage the day he was born, in 1977, he said. He would have met Steve Scheib when he was three years old.
Scheib and his wife, Sheila, first traveled to Haiti in February 1981 for two weeks to volunteer at the orphanage with a group from their church. The Scheibs went back the next year, and they kept going back, every year between 1981 and 1986. They lived in the country for a 15-month period in 1988.
“It was overwhelming for my wife and I, just the experience of being there,” he said. “We felt that God called us to go back.”
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Berthony left the Ebenezer Glenn Orphanage when he was 25 years old, started work as a painter and raised a family in Marchand Dessalines — he and his wife have a two-year-old daughter, along with their son, Lens.
Even into adulthood, Berthony maintained his connection with the orphanage. Scheib said he and Berthony worked together several times over the years on various projects at there.
Berthony first noticed the growth on his neck about three years ago, but initially had brushed it off. He had been eating well and taking care of himself and thought it meant nothing.
It wasn’t until roughly two years later, when Berthony went to the hospital for an unrelated issue — a pain in his abdomen — that the doctor told him the enlargement wasn’t normal. He was sent for imaging, and it was determined he had a goiter that needed to be removed.
“The last couple years, when I noticed this goiter that was growing on his neck, that’s when I started contacting different doctors to try to find out what we could do to fix it,” Scheib recalled.
As Scheib, a salesman for a golf wholesale business, worked to get Berthony to the United States, he learned of Lens’s condition. Mercy Medical Center doctors did not discover it was congenital cyst until the time of the operation. Without knowing what it was, it couldn’t be safely operated on in Haiti.
Lens “said he’s very happy because he knows it was something that could potentially be done in Haiti, but he knows it would be better done here with better-trained doctors,” said the translator relaying Lens’s comments before the May 9 operation.
It was through Scheib’s daughter, Kara Goslin, who had the connection to Mercy Medical Center. Goslin is a physician assistant at Mercy, and had reached out to Sister Susan O’Connor, chairwoman of the Mercy Foundation and told her of Berthony’s and Lens’s conditions.
Mercy officials agreed to take on the cases, and when looking for the doctors to do the procedures, Dr. Shane Gailushas, an otolaryngologist, and Dr. Vincent Reid, surgical oncologist and medical director of the Hall Perrine Cancer Center, volunteered.
Gailushas and Reid agreed to do the procedures even before Berthony and Lens set foot on American soil. Before they were able to examine the patients themselves, the doctors’ first look at their conditions was through photographs and some blood tests.
Reid, who is involved in a project to establish a breast cancer program treatment in Jamaica, his country of origin, said “there’s a certain component of third-world medicine I can appreciate.”
“I understood the difficulty being able to get this done and the challenges people can have finding a certain level of health care,” Reid said.
Doctors are meant to help people, Gailushas said simply.
“In medicine, it’s why we do what we do,” he said.
Berthony and Lens arrived in Cedar Rapids on April 16, after receiving their visas.
Funding for the plane tickets to the United States was donated by a friend, who preferred not to be named for this article, and the physicians at Mercy waived their fees for the procedures. But it’s been Steve and Sheila Scheib who have been covering the pair’s other expenses — food, clothing, additional medical tests.
But to them, it wasn’t a difficult choice.
“If you knew somebody and you had known him since he was three or four years old, and you knew his medical condition, and that it couldn’t be fixed in Haiti, how could you not?” Scheib said. “I would do that for any child that grew up in that orphanage.”
As they waited for the operation, Berthony and Lens stayed with the Scheibs. Sheila, who works at a Cedar Rapids health care organization, jokes that all they want for dinner are the rice and bean recipes they’re familiar with in Haiti.
Despite the language barrier, Lens has made friends easily with the Scheibs’ grandchildren. At a birthday party for Kara Goslin’s youngest, Lens was teaching the younger attendees how to make a whistling sound by bringing cupped hands to the lips.
To Berthony, staying with the Cedar Rapids family made him feel “like I was at home in Haiti.”
On May 9, Berthony and Lens were prepped for surgery. Steve and Sheila Scheib and Kara Goslin were close at hand. The group said a prayer before Lens was wheeled off first to an operating room.
Things went smoothly for Lens’s procedure, which was done in about an hour. The mass was growing next to the skin, and did not impede functionally.
When Lens woke up, he requested Doritos. He was given pudding instead.
Berthony’s operation, on the other hand, was deemed more complicated by the doctors. Because of its placement near key arteries and nerves in the neck, there was a certain level of risk involved in the procedure. The surgical team wouldn’t know how the goiter interacted with these nerves and arteries until they were in the midst of the operation.
“The larger it gets, the more difficult the surgery is in terms of those structures because things get shifted and more,” Gailushas said before the surgery. “It occupies more space. In that sense, it’s going to be more complicated because of the size.”
But in the end, things went without a hitch on May 9. The surgery lasted a couple of hours and the thyroid gland wasn’t encasing any key arteries or nerves. However, the CT scan didn’t show its actual size, which turned out to be comparable in size to a tennis ball. Reid said he didn’t realize it was that big. And it was almost fully around Berthony’s airway.
“I’m not sure how (Berthony) was breathing,” Reid said to the waiting family members following the surgery. “A deep breath is going to feel much different.”
The pair had a follow-up appointment in Reid’s office this past Thursday. There was some swelling, but both were healing well and were cleared to return to their normal activities.
Berthony will have to take medication to supplement the hormones, and it will take some time before the right balance is found, Reid said. There may be some challenges coordinating tests and getting the right medication to Haiti, but Reid was confident that any potential roadblocks won’t have a major effect on Berthony’s health.
The Ceneliants are set to return to Haiti on Wednesday.
The gravity of the donation he and his son were given was not lost on Berthony, who expressed gratitude after the Thursday appointment to the Scheib family and everyone else involved in their journey.
“If I didn’t meet these people, I wouldn’t know what I was going to do,” said Berthony, in English. “I ask myself sometimes, ‘Why it’s me?’ (But I believe) God has a plan for me. I have to go back to Haiti and go to church and find what God what means for me.”
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