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A'Zhari and A'Zhiah's Story

Friday, May 10, 2013

Nachell Jones found out when she was 12 weeks pregnant that she was carrying twins.

"I laughed when I found out," she said. "I didn?t think it was real."

The Franklin, Va., resident?s cheerful uncertainty about the future soon transformed into a tense uncertainty though as she was sent to a high-risk pregnancy specialist in Norfolk, learning her twins were conjoined.

"I was confused and wondered if it was something I did wrong," Jones said.

Conjoined twins are the result of a fertilized egg that divides as it would in cases of identical twins, but doesn?t fully separate; they occur about once every 200,000 live births. Doctors assured Jones she had done nothing wrong.

On Oct. 10 at 36 weeks gestation, Jones gave birth through a planned cesarean section to 10-pound (combined weight), 17-inch conjoined twin girls, A?Zhari and A?Zhiah, at the VCU Medical Center.

Five days later, CT scans of the girls' chests, abdomens and pelvises were obtained, revealing a conjoined liver and shared pericardium, the sac around the heart. Externally, the girls were conjoined at the lower chest and abdomen.

As the overall survival rate of conjoined twins is somewhere between 5 percent and 25 percent, not surprisingly A?Zhari and A?Zhiah began to experience serious medical problems in just their second week of life, which resulted in the emergency separation of their conjoined liver on Oct. 25.

Marc Posner, M.D., and David Fisher, M.D., both of the Hume-Lee Transplant Center at the VCU Medical Center, performed the liver surgery.

"Before the surgery to separate the liver, A?zhari?s heart set the pace for A?zhiah?s so they beat at the same pace, which strained the smaller twin?s heart and caused cardiac hypertrophy, or thickening of the heart," said David Lanning, M.D., Ph.D., associate professor in the Department of Surgery at VCU School of Medicine and surgeon-in-chief, Children?s Hospital of Richmond at VCU. "Their heart beats equalized once the liver was separated because there was no longer excess blood draining into the shared liver."

Renal and cardiac issues prevented the full separation of the girls during the first surgery, so they were closely monitored in the following months by specialists from numerous areas, including cardiology, neonatal medicine, nephrology, gastroenterology, radiology, surgery and transplant surgery.

Almost six months later, the girls? medical issues had resolved and were both ready for their full separation at VCU Medical Center on April 22.

2x2

It was only a year-and-a-half prior to the April 22 surgery that VCU Medical Center physicians and support personnel were in a similar situation, separating then 19-month-old conjoined twins Maria and Teresa Tapia. Lanning led the teams that separated both the Tapia and Jones twins.

"Our experience with the Tapia twins has been vitally helpful in this case, but while the Jones girls look similar to the Tapia girls on the outside, there were a different set of challenges that we had to overcome as a team," he said. Also, at only 6 months old, the Jones girls were much younger than the Tapia girls during their surgery.

The Jones girls shared a liver and pericardium while the Tapia girls shared a liver, part of their biliary system, pancreas glands and the first part of the small intestine, or duodenum.

An element of each separation experience that was quite similar was the support that came from the VCU community. In each instance, students and faculty from various disciplines used their expertise to help the girls and the surgery.

Professors and students in the VCU Department of Fashion Design and Merchandising worked to design dresses for both sets of twins.  Additionally, recent VCU sculpture graduates and current students worked to craft a cast model of each set of twins that a plastic surgeon could study to ensure the appropriate size skin expanders were used to achieve closure for the girls after separation.

Separation

A?Zhari and A?Zhiah?s complications early in life, coupled with continued risks from feeding difficulty and possible aspiration, made the separation surgery imperative, and it required a team of nearly 40 physicians, nurses, surgical technicians and specialists to ensure its success.

The April 22 surgery – the second and final phase of their separation – lasted 14 hours and involved the separation of the shared pericardium that surrounded both hearts.

"They had to open up the pericardium and divide the common area including a small bridge/band of tissue that was between the two hearts," Lanning said. "The bridge was about one-third of an inch in diameter and about 1 inch long. The two hearts beat separately once the bridge was cut."

Lanning said the most difficult part of the surgery came at the beginning when putting in catheters, breathing tubes and central arterial lines.

"Typical surgical positioning is flat and the girls had to remain on their sides," he explained. "They are small and had been in the hospital for six months, which made access more difficult and time consuming."

The area where A?Zhari and A?Zhiah were joined will be covered with skin thanks to an earlier procedure in which surgeons placed tissue expanders in the twins. The balloon-like expanders enabled the growth of excess skin to be used for reconstruction following surgery.

At 3:52 p.m. on April 22, A?Zhari and A?Zhiah were fully separated. The girls were transported to separate rooms in the Neonatal Intensive Care Unit, where they will recover and eventually be reunited in one room.

"We?re very optimistic that the twins will have a full and complete recovery," said Lanning. "At this point we don?t anticipate any future operations or need for any long-term medications. I see the girls living full happy lives as individuals."

"I?m looking forward to finally being home with them and with family," Jones said. "I want to give the girls the best future."

A future that, while not yet written, has transformed back into a cheerful one. 


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