Conjoined twins posed ethical dilemma for Massachusetts hospital

BOSTON (Reuters) - Doctors at the MassGeneral Hospital for Children faced an ethical challenge when a pair of conjoined twins born in Africa arrived last year seeking surgery that could save only one of them, according to a medical journal article due out Thursday.

The twins were connected at the abdomen and pelvis, sharing a liver and bladder, and had three legs.

An examination by doctors at the hospital determined that only one of the girls was likely to survive the surgery, but that if doctors did not act, both would die, said Dr. Brian Cummings, chairman of the hospital's pediatric ethics committee.

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Conjoined twins separated
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Conjoined twins separated

Acen (left) and Apio (right) Akello arrived at Nationwide Children`s Hospital conjoined as one and were separated during a 16-hour surgery on Sept. 3, 2015. The tissue expanders were placed in between them underneath their skin to prepare for separation. The girls are pictured here in their hospital room with their mother, Ester Akello.

(Photo: Nationwide Children's Hospital)

Acen (bottom) and Apio (top) Akello the morning before their separation surgery at Nationwide Children`s Hospital on Sept. 3, 2015.

(Photo: Nationwide Children's Hospital)

Pre-operative 3D modeling was an innovative part of how surgeons at Nationwide Children`s Hospital prepared for the separation surgery of twin girls who had part of their spines, muscle and tissue separated.

(Photo: Nationwide Children's Hospital)

Dr. Jeffrey R. Leonard, chief of neurosurgery at Nationwide Children's and neurosurgeon, Dr. Lance Governale, assisted each other to delicately separate the intertwined spinal cords of the conjoined twins.

(Photo: Nationwide Children's Hospital)

Carefully dividing the soft tissue, Dr. Gail Besner of Nationwide Children`s Hospital separates 11-month-old twin girls who had their spines, muscles and tissue separated during at 16-hour surgery.

(Photo: Nationwide Children's Hospital)

Twin girls were on two separate tables immediately after their separation surgery, but the surgery was still hours from being completed. The team from Nationwide Children's Hospital that was formerly huddled around one operating table now huddled around two, and additional nurses and anesthesiologists were brought in to assist in the reconstruction.

(Photo: Nationwide Children's Hospital)

Dr. Gail Besner of Nationwide Children`s Hospital took a brief moment away from operating to tell Ester Akello that her children were no longer conjoined.

(Photo: Nationwide Children's Hospital)

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"It really is one of those exotic cases in bioethics, because you have two individuals with different rights and claims and you have parents with different rights and claims," Cummings said in a phone interview. "Most of the time our ethical conversations are simpler."

The girls were 22 months old when they were brought to Boston for surgery from an east African country where their family faced religious persecution.

The hospital withheld further details on the family's identity.

The smaller twin, as expected, died following the 14-hour surgery conducted in mid-2016, but the survivor, now 3 years old, is recovering, Cummings said.

"She's actually doing amazingly well," Cummings said. "The family came in for questions and when she walked in everyone applauded."

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Conjoined Oklahoma twins
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Conjoined Oklahoma twins
It is hard to tell 1-year-old twins Hartlyn and Everlee apart.

"They're smart, they're happy, they're healthy," said Khalie Perez, the twins' mother. "They love exploring."

Before Hartlyn and Everlee were born, first time parents Khalie and David Perez found out their unborn daughters were conjoined at the abdomen.

The couple was scared and uncertain about to what to expect.

"We went home when we found out about them, and looked up every possible statistic and story," says Khalie. "I probably read them ten times a piece."

As soon as Hartlyn and Everlee were born on July 8 of last year, doctors had to immediately operate to separate them, a grueling task.

The separation surgery required surgeons, nurses, anesthesiologists and obstetricians who had to work together to insure the safety of the twins, and their mother.

Despite the challenges the medical team faced, the separation surgery was successful.

Khalie and David were thrilled to take their baby girls home.

"There have been some obstacles of course, but they've overcame, and they're thriving," says David. "They're doing really well."

Hartlyn and Everlee had to overcome some additional hurdles like more surgeries to correct organ placement in their abdomens.

Khalie and David decided to celebrate the twins' first birthday by reuniting with the team of specialists and support staff at OU Children's who helped the two darling girls get their start in life.

"Just to have the hope the doctors here provided, and the optimism, and the care that they've shown the girls," says Khalie.

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The case had posed the hospital with the challenge both of ensuring that the parents understood the risks of the procedure and that the hundreds of medical professionals needed to perform the complex series of operations to separate the children were comfortable with the ethics of the situation.

"For some people, it's an act of killing and others see this as the only way I can help," Cummings said. "We don't want to put people in a place where they don't think they're doing good care."

It was not the first time the hospital had treated conjoined twins, a rare condition seen in about one in 200,000 births. The hospital chose to publicize the case in Thursday's edition of the "New England Journal of Medicine," in part to highlight a difficult case where doctors knew both children would not survive.

Just a third of conjoined twins survive a single day after birth, according to the University of Maryland Medical Center.

(Reporting by Scott Malone; Editing by Bernadette Baum)

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