Baby Dominique, born with 4 legs and 2 spines, survives risky surgery

Posted at 5:37 PM, Mar 21, 2017

CHICAGO – It was late January when Nancy Swabb found herself wanting to help a family across the Atlantic Ocean, in Cote d'Ivoire -- all because of a photo.

A friend had shared a post on Facebook about the need for a host family for a 9-month-old girl for two months while she received medical care in Park Ridge, Illinois. The post came from Children's Medical Missions West, a nonprofit that helps transport children around the world to receive free medical care for rare conditions and issues.

Swabb saw a photo of baby Dominique on her mother's lap. "That photo really captured my heart," Swabb said. "She looked so sweet."

The nonprofit has asked CNN not to include Dominique's last name for privacy reasons.

Dominique had a twin, but she never fully developed, instead fusing with her in the womb. She was born with what is known as a parasitic twin, where the underdeveloped twin formed incompletely and was entirely dependent on Dominique's body.

She was born with her parasitic twin's waist, legs and feet growing out of her back. Dominique was also born with two spines that were closely connected. Cases of parasitic twins are so rare that most of them are known by the names of the patients.

Baby Dominique was born with a parasitic twin attached to her back from the waist down. She was fostered by a US family so she could have complicated surgery. (CNN)

Without surgery to remove the parasitic twin, Dominique's life would not be a very long one. Her tiny heart and lungs were working to support the equivalent of two bodies. The mass of kicking legs attached to her neck and back would continue to grow, causing deformity, abnormal forces on the spine and a life of pain, doctors said.

But the complicated surgery would have to be done at a hospital equipped to handle the risks, and Dominique would need a foster family to help her get through it.

A part of the family

Swabb, a native Chicagoan, realized that the Park Ridge, Illinois address belonged to Adovcate Children's Hospital, only about 7 miles from her family's home. She and her husband, Tim, knew they could help and reached out.

They went through a vetting process and confirmed that they would be able to take Dominique to all of her appointments at the hospital, which had been scheduled through the organization.

Children's Medical Missions West had raised funds for Dominique's flight, in which she would be escorted by a flight attendant who donated her time.

But the family, which has two adopted daughters -- Lena, 15, and Mara, 9 -- realized they still needed to make ready for Dominique's arrival.

Swabb, a special events coordinator, asked her neighbors in the family-filled Edgebrook community whether they could borrow anything for the baby they would be fostering. Within two days, a pile taller than Swabb herself filled the house. Neighbors eagerly donated packages of diapers, formula, wipes, clothes, a stroller, a car seat and a playpen. Mara and her friends organized all of the items in the family's basement to make them easily accessible.

Nancy's 9-year-old daughter, Mara, bonded with Dominique almost instantly. (CNN)

Baby Dominique arrived to a warm reception three days later, on February 5.

Swabb's daughters were thrilled to have a new baby in the house. Mara seemed to bond with Dominique almost instantly, and they enjoyed making each other laugh.

"Baby Dominique is so affectionate and receives love so well, so we knew right away that she comes from a loving family," Swabb said. "She's bubbly, funny, spirited, full of smiles, and has the brightest, happy eyes."

Swabb's daily walks with Dominique in the stroller stretched to an hour as neighbors stopped to greet the baby they had helped welcome.

The neighbors offered to watch her so Swabb could get things done around the house. Their home became open to visitors. Even her cousin's teenage sons enjoyed playing peekaboo and making silly faces just to make Dominique laugh.

"She has become the community baby, and everyone has been really interested in her story," Swabb said.

A complex surgery

Even before her surgery on March 8, baby Dominique spent hours in the hospital, undergoing tests and preparation. Doctors at Advocate Children's Hospital ordered an MRI, an MRA, a CAT scan, X-rays and a CT myelogram to analyze the anatomy of the the parasitic twin and how it connected.

They used the scans and imaging to create a 3-D model of Dominique's two spines. They also discovered a second bladder behind the extra limbs that would need to be removed.

Dr. John Ruge, a pediatric neurosurgeon at Advocate, had worked with Children's Medical Missions West before. He constructed a team of five surgeons and more than 50 physicians spanning specialties across the hospital to remove the excess limbs.

"It allowed us to come up with a plan of attack how we could safely and effectively remove this very complex part attached to this little baby's spine and end up with a healthy and happy child at the end of the day," said Dr. Frank Vicari, a pediatric plastic and reconstructive surgeon at Adovcate who has operated with Ruge for years.

Pediatric neurosurgeon Dr. John Ruge examines Baby Dominique prior to surgery. (CNN)

The team staged a mock operation to figure out who would be doing what at specific parts of the procedure.

On March 8, the team worked for six hours to remove the entirety of the parasitic twin. They had to be careful to disconnect any nerves and blood vessels so that Dominique wouldn't sustain damage, numbness or paralysis.

Through extensive planning, they were even able to remove it all in one piece. She is now 2 pounds lighter.

All that remains is part of an abnormal bone that stabilizes Dominique's spinal column. They used soft tissue from the twin's thigh to cover the area.

Baby Dominique exceeded their expectations at every turn. She recovered so well that she was sitting up the next day and sticking her tongue out. She went home in five days, and the doctors do not foresee any complications or need for followup surgery.

Dominique still has two spines. They are hers alone. They are so intertwined that the doctors aren't entirely sure which spine her structural support and bodily functions rely on. To look at an X-ray, Dominique has one brain connected to one spinal cord that diverges into two, each going into a spinal column.

The doctors were not able to find a comparable case to Dominique. She is unique, they said.

They don't anticipate that having the two spines will affect her.

"Like any child, she needs to be cared for and watched for developmental issues," Ruge said. "She has slightly more risk because she is built slightly more different than other children. But she looks great. We had 100 worries before surgery, and risks were high, so we're pleased with how she's doing."

The team at Advocate Children's Hospital combined neurosurgeons, plastic and craniofacial surgeons, pediatric orthopedics, anesthesiologists, nephrologists, radiologists, the Pediatic Intensive Care Unit, physician assistants, nursing staff, therapists and many others to make baby Dominique's surgery a success -- with no surprises.

"One of the joys of being a physicians is taking a challenging case, working with a team of talented people where each of us contributes something and having that be better than any one individual can do," Ruge said. "Everyone had their whole heart in this."

Baby Dominique in the hospital. (CNN)

Swabb's family will continue to foster Dominique until mid-April, when she can be medically cleared to reunite with her birth family in Cote d'Ivoire. In the meantime, Swabb has been sharing photos and updates with Children's Medical Missions West, which translates them into French to communicate with her family across the ocean.

Swabb hopes the two families can meet one day. She already feels a bond with Dominique's birth mother, created by the trust she was willing to place in a stranger to care for her baby.

Five days after surgery, Dominique smiles as she prepares to leave the hospital. (CNN)

In the time Dominique has been with the Swabbs, her first two teeth have come in, she saw snow for the first time, and she started eating solid food and sleeps through the night. Swabb can't wait for her to experience more firsts with her family in Cote d'Ivoire.

"I can't wait for her parents to see her," Swabb said. "To give love for a certain amount of time and have a connection with a family you've never met is so amazing. You have that trust in each other and do the best you can to give love and care and bring her back healthy and ready for a new life."