Carriage Hill Labs: "A Lifelong Bond"
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A Lifelong Bond:
"Come here, Captain!" shouts Marcos Troast to the black lab chasing the tennis ball his brother, Geremias, has just thrown. The 13-year-old twin boys run through the lush green grass and follow the dog down to the ocean’s edge. There, they grow distracted by crabs and snails in the shallow tide pools until Captain licks Marcos’s face and the game of fetch resumes.

Once joined from their chests to their bottoms, the Troast twins are now happy, active seventh graders.
Once joined from their chests to their bottoms, the Troast twins are now happy, active seventh graders.

Terry Buchmiller, MD, staff surgeon at Children’s Hospital Boston, watches the boys play in her back yard overlooking Quincy Bay, while talking to their adoptive parents, Nancy and Rich. "They’ve grown up so much," she says and smiles. Buchmiller met the Troasts 13 years ago, when she helped change the twins’ lives. She’d just started as Children’s chief surgical resident under Hardy Hendren, MD, who was chief of surgery. Nancy had called Hendren seeking his expertise for the boys’ unique problem: They were extensively joined from their chest to their bottoms - they were what’s commonly known as "Siamese twins."

The boys were from the mountains of Guatemala and had been found by Children of the Americas, a non-profit organization that provides medical care to under-privileged children throughout the world. They were born in a rural hospital in Huehuetenango and because of their condition, would need more intensive care than any hospital in their country could provide.

The group tracked down Nancy and Rich Troast at their home in New Jersey through an affiliate organization called Healing the Children. While the couple had five children of their own, they regularly took in children from other countries who needed a place to stay while undergoing medical procedures in the United States. When the group called Nancy about Marcos and Geremias, she couldn’t refuse. "I knew it would be a challenge, but I really wanted to help these boys," she says. So the Troasts took them in when they were 3 months old and quickly began to think of them as their own.

Conjoined twins seldom survive without serious complications and health problems, so the boys’ best chance at living long lives was to be separated. But they would need a surgeon with incredible skill and experience. A local doctor recommended Hendren, a renowned surgeon who completed Boston’s first conjoined twin separation in 1969 and 14 successful separations during his 55-year career.

In June of 1996, Nancy arrived with the twins at Logan airport. Hendren couldn’t imagine how she’d manage with the twins and their luggage, so he and his assistant met them and brought them to the hospital. The boys spent the next several days having X-rays, anesthesia evaluations and other tests before the complicated operation.

Then, in a grueling 23-hour surgery, Hendren, who was 70 at the time, Buchmiller, and the surgical team carefully separated the boys - who shared their livers and colon. "Separating the boys was amazing and required so much forethought and planning," Buchmiller says. "It was my first time working with such an elaborate team." The twins emerged as two babies with
all their own limbs and organs.

Doctors Hendren and Buchmiller, on left, with the Troast family.
Doctors Hendren and Buchmiller, on left, with the Troast family.

Nancy stayed with the boys at Children’s for four months while they recovered. During this difficult time, she frequently turned to Buchmiller. "She was so approachable and answered our endless questions," says Nancy. "She’d let us call her at any time to get advice, for counseling and to quell our fears."

As Nancy recalls the beginning of their long friendship, Buchmiller laughs and says it was all just part of being a surgical resident. "I was there every day and night and hardly slept," she says. "What did it matter if they called in the middle of the night?" Yet even today, Buchmiller has maintained a close relationship with the Troasts, who officially adopted the twins shortly after their separation. While Buchmiller is no longer their doctor, she continues to be their consultant, advisor and friend. "I spent so much time with them that I really got to know them and build a tight bond and relationship," she says.

Even though the Troasts lived in New Jersey, they returned to Children’s many times over the years for the twins’ ensuing surgeries, including hip surgery by orthopedic surgeon John Emans, MD, and urological procedures with Hendren. "We trusted Children’s and were attached to the doctors," Nancy says.

Geremias and Marcos are now healthy adolescent boys and have transitioned to local New Jersey doctors. But the Troasts never let distance keep them from staying close to Buchmiller over the years. In 2000, when she left Children’s for a position at Cornell, the Troasts went to visit Buchmiller there. And she’s visited them at their home in New Jersey; in the fall, she brought the boys pumpkins for Halloween. "There’s a special place in my heart for the Troasts," she says. "The family’s commitment to the boys is incredible."

Since Buchmiller returned to Children’s in 2004, the Troasts visit her whenever they can. The boys jump at the chance to play with her dog, Captain, or head out on a boat ride from her home. And of course, they still call her at any hour. "I pick her brain all the time," Nancy says. "I trust her judgement and recommendations."

As Nancy watches the boys chase Captain, she wonders what their future holds. They are spitting images of each other, except Marcos is slightly taller. They’re small for their age, but their faces show hints of the young men they are becoming. They have distinct personalities, but they’re incredibly close and do most of their activities together, including backyard baseball.

This year, they’re starting 7th grade. "They’re becoming more independent all the time," Nancy says and watches them run out of sight to the water’s edge. Because they have slight language-based learning disabilities, she’s considering enrolling them in a specialized high school, perhaps one in which they can embrace their love for animals.

Geremias and Marcos laugh as Captain roles over and begs for a treat, which they readily toss to him. "It’s amazing to see how far they’ve come," says Buchmiller. Soon, Hendren and his wife, Eleanor, arrive at Buchmiller’s house and walk out to see the boys he separated all those years ago. "I see a lot of patients that I’ve taken care of," Hendren says. "It’s a special privilege to have people want to come back to see their surgeons and for us to see them living such normal lives." He asks the boys if they remember him. They smile sheepishly, shrug and then run off to
the dog again.

But Nancy certainly remembers. "I have such an absolute appreciation for Children’s for everything they have done for the boys," Nancy says. "When we visit, it’s like coming home."

A Chance Reunion...
Lauren Kerr’s second trip to Children’s Hospital Boston’s Extracorporeal Membrane Oxygenation (ECMO) program, which turns 25 this year, was as a video intern for the Critical Care Division. But her first visit to ECMO came almost immediately after she was born, 19 years earlier. "My mother still hadn’t started labor on her due date,” says Lauren. “During a check-up, the doctors saw signs coming from me that they didn’t like." Her mother was rushed by ambulance to a hospital in nearby Portland, Maine for an emergency c-section. It turned out that Lauren wasn’t breathing due to meconium aspiration syndrome, a condition in which a baby’s intestinal waste leaks into the amniotic fluid. This could, in turn, obstruct her airway and cause inflammation of her lungs.

A Chance Reunion: Jay Wilson, MD and Lauren Kerr.
A Chance Reunion: Jay Wilson, MD and Lauren Kerr.

Lauren spent three days receiving ECMO, getting oxygen therapy to clear the contamination from her lungs, allowing her to breathe normally. A week later, she was healthy enough to go home, only needing to come back every three months. These check-ups stopped when Lauren was 3, and she didn’t think much about Children’s over the years. "I think I came to one of the annual ECMO reunions, but I only remember it from the pictures my mom took," she recalls. "We used to get the invitations, but we’ve moved since then, so eventually the mail from Children’s stopped finding us."

That changed in 2008 when Lauren was preparing to start her freshman year at Colby College. "Out of the blue, we got another invitation to an ECMO reunion, just as I was leaving for school," she says. Lauren’s mother sent an RSVP to Nancy Craig, RRT, supervisor for the Children’s Respiratory Care Unit. Craig remembered working on Lauren’s case in 1990, and began an email correspondence with her mother to see how Lauren was doing.

"My mom asked Nancy if she knew of any internships at Children’s," Lauren says. Craig recommended that Lauren write a letter introducing herself to Traci Wolbrink, MD, clinical fellow in the Critical Care Division, who is working on a video project called PICU Without Walls. The videos present hands-on demonstrations of general critical care procedures by Children’s nurses, therapists and doctors. The curriculum, developed for use in developing countries, is tested at National Pediatric Hospital in Phnom Penh, Cambodia. The goal is to distribute them to providers around the world at no charge.

Lauren has spent the last few months filming and editing these videos, covering topics like asthma and pharmacology. She’s also worked on dubbing them into other languages, beginning with French. "I actually speak some French, so I’m lucky that was the language we started with," she says.

One of the highlights of Lauren’s return to Children’s came when Wolbrink asked her if she wanted to revisit the ECMO Program. "It was humbling, and more than a little mind-blowing," she says. "There was a baby in ECMO who was born healthy, but contracted H1N1. And while I was visiting, Dr. Wolbrink paged a doctor from surgery, who she thought might have worked on my case." That doctor turned out to be Jay Wilson, MD, director of Surgical Critical Care, and director of ECMO since 1989. "I certainly remember working on Lauren’s case," says Wilson, who was the doctor who most likely inserted Lauren’s catheter when she was a newborn. During their reunion, Wilson took the opportunity to check that Lauren’s scar had healed well during the last two decades. "I'm starting to hear from a lot of these kids as they grow up," says Wilson.

"The whole experience has been fascinating," says Lauren, who returned to Colby in September. She’s now a sophomore and International Studies major, but her work with Wolbrink seems to have sparked other interests. "I've always loved film, but this has been my first experience in actually making it," she says. "It’s been a cool learning experience." Lauren is also grateful to have had the chance to revisit her past at the ECMO Program. "I don’t know how many babies have been saved by ECMO in 25 years, but I’m glad to be one of the ones who got to come back and say thank you."


 
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