“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, twins connected at the spine.
Ruge, the neurosurgeon, said there are fewer than 30 cases documented in medical literature — so few, in fact, 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 an 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 all 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, from Chicago, 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 had seen Dominique's picture in a Facebook Post from Children's Medical Mission West. The photo, which showed Dominique apparently sitting on her mother's lap, read: “Needing a home in Chicago area for a baby girl coming 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 CAT 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, the neurosurgeon, 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 3D 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 now 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 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 schoolteacher and her mother is a stay-at-home mom who cares 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 read. “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, Dominique's host mom, 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.”
But, Swabb said, while Dominique was in Chicago, she brought a community together.
“Friends and neighbors offered diapers and wipes and formula,” Swabb 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 English words like, “da, da, da.”
They saw her experience snow, grow her first two teeth and start to bear weight on her feet.
“She'll always be part of our family,” Swabb said. “Even though we've never met her parents, I feel like we have such a bond because of the trust among strangers in another country on another continent.
“It really has been amazing just how this whole network has put itself together, from the doctors to our little part of it.”
This story has been updated.