Surgeons remove parasitic twin protruding from baby girl’s back
It took a team of 50 six hours to remove extra pelvis, legs, feet, toes
The examinations, X-rays and dry runs using a 3-D model of her tiny spine all came down to this: A team of surgeons made a careful incision and, over the next six hours, systematically removed an extra pelvis, legs, feet and tiny toes that were protruding from her neck and back.
Since birth, baby Dominique had been carrying her parasitic twin.
“It’s as if the parasitic twin dove into Dominique’s body and almost made it in except for the waist out,” said John Ruge, director of pediatric neurosurgery at Advocate Children’s Hospital near Chicago.
Doctors say parasitic twins — asymmetric conjoined twins in which one depends on the other’s bodily functions — are extremely rare. Even more uncommon are parasitic rachipagus twins, connected at the spine.
Ruge said there are fewer than 30 cases documented in medical literature — so few that they are often referenced using the patients’ names.
“This one would be ‘Dominique from Chicago,’ ” Ruge said.
Ten-month-old Dominique, whose last name has not been released, traveled more than 5,000 miles in February from Ivory Coast in West Africa to Chicago to undergo the operation at Advocate Children’s Hospital to remove her parasitic twin. Her doctors said the surgery was necessary because without it, her heart and lungs would struggle to support the extra limbs and the strain would ultimately shorten her life.
It would take an army of volunteers to make it happen.
Children’s Medical Mission West, a nonprofit organization based in Ohio, arranged Dominique’s trip to the United States, according to Advocate Children’s Hospital.
Flight attendants accompanied her from Ivory Coast.
On Feb. 5, a host family in Chicago was waiting to take her in and care for her during her stay.
“Dominique flew halfway across the world with just a small bag that contained a few pairs of pajamas, diapers, a bottle and powder formula called Nursie, a sippy cup, a rosary, and a piece of beautiful fabric that her mother wore around her shoulders for a photo at the Abidjan airport before she bid farewell to her beloved baby for two long months,” Nancy Swabb of Chicago, the host mother, wrote on Facebook.
“Dominique was jet-lagged and tired that first evening. (Ivory Coast is six hours ahead of Chicago.) The next morning, however, Dominique's bubbly personality was on full, joyful display!” Swabb wrote.
Swabb had seen Dominique’s picture in a Facebook post from Children’s Medical Mission West. The post, along with a photo that showed Dominique apparently sitting on her mother’s lap, said: “Needing a home in Chicago area for a baby girl com- ing Feb. 5th. She will be in the states for 2 months. Let me know if you are interested or know someone willing to host this baby.”
“It really spoke to me,” said Swabb, who has two adopted daughters with her husband, Tim. “We just wanted to open our hearts and our home to a baby.”
Swabb took Dominique to her doctor’s appointments, where she met her surgical team and underwent extensive tests, including an MRI, an MRA, a CT scan, X-rays and a CT pyelogram to help doctors construct a 3D model of her unusual anatomy. She carried her twin’s pelvis and bladder, legs, feet and toes (and toenails), and spine — which was intertwined with her own, her doctors said.
“This provided a challenge with regard to the disconnection,” Ruge said about the infant’s two spines. “It turns out the parasitic twin’s pelvis was attached to the spine and providing some structural stability for Dominique’s spine. So it was important to understand how the structural stability of her spine was so that we did not destabilize her when we removed the parasitic twin.”
For weeks, the medical team pored over Dominique’s case, discussing possible concerns and solutions.
They practiced the surgery using the 3-D model.
Then early in the morning of March 8, Swabb took the child to Advocate Children’s Hospital, where more than 50 surgeons, nurses and clinicians were waiting.
“The highest risk to Dominique was paralysis,” Ruge said. “The reason is that the legs were functional from the parasitic twin, so they had nerve innervation from Dominique’s spinal cord and if there were any traction or pressure put on Dominique’s spinal cord, that would cause her to be paralyzed. The cervical portion of Dominique’s spinal cord had no bony protection. Everything was planned to avoid this problem.”
The surgeons disconnected the pelvis, nerves and blood vessels, then removed Dominique’s parasitic twin.
They were left with a gaping hole that they covered with soft tissue and muscle from the extra appendages.
From the outside, Dominique looks like most other infants, aside from a bump on her neck that doctors say will go down over time.
Inside, her neurosurgeon said, she still has some “peculiarities” — she kept a piece of abnormal bone that is stabilizing her spinal column and one of her kidneys is located in the upper portion of her chest.
But, Ruge said, “Everything is functioning normally, and I expect Dominique to have a normal life.”
Five days after her surgery, Dominique was discharged from Advocate Children’s Hospital and returned to her host mother’s care.
“She’s just back to normal,” Swabb said.
Swabb said she has been doing her own form of physical therapy for Dominique — having Dominique turn her head side to side and putting things out of Dominique’s reach so that she had to grab them.
“If you met her now you’d never know she had complex surgery,” Swabb said.
Dominique’s father is a primary school teacher and her mother stays at home to care for Dominique and her three older sisters, according to a statement from Advocate Children’s Hospital. “Her family could not financially afford to accompany her, but is receiving ongoing updates,” the statement said. “Dominique will be escorted home in a few weeks and will find her family waiting at the airport in Abidjan, the largest city in Ivory Coast.”
Swabb said she has great respect for the young child’s family.
“They were not willing to give up on their baby girl despite her challenges and they sought this care for her, so it’s inspiring to hear their story of love,” she said. “They were willing to trust escorts who flew her here and doctors they had never met and a host family. They really put a lot of trust in the whole network.”
In addition, Swabb said, Dominique has brought the Chicago community together.
“Friends and neighbors offered diapers and wipes and formula,” she said. “She sleeps in a borrowed Pack ’n Play, she rides in a borrowed car seat. Neighbors bought bottles for her at the store. . . . We're kind of living in a turbulent world and she’s brought a ray of sunlight to our neighborhood and our family.”
The Swabbs said they taught Dominique how to repeat words like, “da, da, da.”
They saw her experience snow, grow her first two teeth and start to bear weight on her feet.
Surgeons prepare 10-month old Dominique for surgery on March 8 at Advocate Children’s Hospital in Park Ridge, Ill. Doctors say cases in which one twin depends on the other’s bodily functions are rare.
Host mother Nancy Swabb holds Dominique, who traveled 5,000 miles in February from Ivory Coast for her surgery.