Parting is bittersweet for formerly conjoined twins

Credit: Duncan Stewart

Fiorella (far left) and Yurelia Rocha-Arias (next left) sit side-by-side, next to a mirror, during physical therapy at Lucile Packiard Children's Hospital. The twins, born conjoined, were separated by Nov. 12.

Like many twin sisters, Yurelia and Fiorella Rocha-Arias shared a bond from birth. But unlike most, theirs was made of flesh and blood.

The physical connection is now gone, thanks to the efforts of an extraordinary number of people at Lucile Packard Children's Hospital. And on Jan. 22 the formerly conjoined twins and their mother Maria Elizabeth Arias embarked on the first step of their return home to Costa Rica: publicly thanking all those who participated in the remarkable six-month effort. That work has given the girls the gift of independence from each other - and from the non-stop medical and media attention that has surrounded them for most of their lives.

The parting was bittersweet. The spirited toddlers, who were joined facing each other at the chest and abdomen, have endeared themselves to countless people at the hospital and the Ronald McDonald House. In its turn, the little family, although eager to rejoin the twins' father and nine siblings in Costa Rica, will miss the strong support system at Packard Children's.

'My girls were born anew in this hospital,' said Arias Jan. 22 at a news conference as the girls chattered and played in her lap. 'My dreams have come true.'

Lead surgeon Gary Hartman, MD, who traveled to Costa Rica in late July to meet the family and bring the girls back to California, also expressed his deep gratitude to the dozens of specialists at Packard Children's who assisted in the twins' care. Prior to the surgery, Hartman estimated the odds of both girls surviving the separation to be around 50 percent.

'When I first met the family I couldn't stop thinking, 'I'm taking these girls away, and I may not bring them back,'' said Hartman. 'I didn't want to be the man who took away their daughters. Thank you to this team. Thank you for keeping me from being that man.'

The family's departure, which could occur as early as this week, is the last step in a remarkable feat of planning and organization that began nearly a year ago. The nonprofit organization Mending Kids International was looking for a hospital with the expertise to separate the girls' shared liver and fused hearts. Yurelia also had a congenital cardiac condition known as double-outlet right ventricle that would require correction soon after separation. Packard Children's fit the bill.

Hartman, who had participated in or led the separation of four previous sets of conjoined twins, was joined in the separation effort by cardiothoracic surgeon Frank Hanley, MD; pediatric cardiac anesthesiologist Gail Boltz, MD; pediatric plastic surgeon Peter Lorenz, MD, and many other representatives of nursing, pediatric general surgery, plastic surgery, cardiac bypass, cardiovascular intensive care and more. Child life specialists, social workers, interpreters and others also worked with the twins throughout their stay at Packard Children's.

Although the risks were high, physicians and family members agreed that the twins stood to benefit hugely. Without separation the girls would never walk normally or spend time apart. Their heads would continue to twist and tilt to one side to allow them to look out at the world and their bodies would become malformed as they adapted to walking and moving in sync. And Yurelia's heart defect could not be corrected.

The girls were separated on Nov. 12 in a nine-hour procedure that was most remarkable for its lack of complications. Each girl had her own complete team of medical specialists, caregivers and equipment, and traffic flow in the operating room was carefully choreographed to allow the surgical specialists to work in turns. The procedure began at 6:30 a.m., and the liver was divided at 11 a.m.

'The most exciting moment,' Boltz recalls of the separation surgery, 'was in the final stage of the separation, when surgeons placed a clamp on the connection between the girls' hearts.' This was the riskiest part of the procedure because it was simply unknown how much the girls needed each other to survive. 'Immediately - as if someone had turned on a switch - their individual stats improved,' said Boltz. 'Their blood pressures improved. It was clear the girls were going to be stronger apart.'

And strong they are. The girls have recovered very well from the separation and their subsequent operations: repairing Yurelia's congenital cardiac condition and reconstructing Fiorella's chest closure and mending her skin flap.

'The twins progressed very well and left our cardiovascular intensive care unit at the end of November,' said pediatric cardiac intensivist Gail Wright, MD. They moved to the Ronald McDonald House in mid-December.

The girls now act and look pretty much like normal 2-year-olds. They've received regular physical and occupational therapy to help them learn to move and walk apart since their separation in November (see accompanying article above). Fiorella, who had been living primarily off her sister's food intake, has received feeding therapy to help her learn to eat.

As might be expected, separation has left more than physical scars. Child psychiatrist Richard Shaw, MD, and his colleagues, have been working with the twins and their mother.

'It was clear before the surgery that the girls recognized they were conjoined,' said Shaw. 'They had their own sense of selves and could identify themselves, their sister and their mother by pointing when asked. There was no confusion.' The girls would get frustrated when their needs conflicted, if one wanted to be picked up and the other did not, for example. Their behavior changed after their separation.

'They were always looking for each other in the beginning,' said Arias, their mother. The girls now sleep together and try to be together as much as possible. She added, 'Yurelia wants her sister to come right when she says so, or else there will be trouble.' But some things haven't changed. 'Before they were separated, when one girl had something the other wanted, they would fight,' said Arias. 'Now that they are separated...it's the same.'

Asked whether the girls will remember being conjoined or their time at Packard Children's, Shaw paused.

'Probably not consciously,' he said, 'but there may be physical memories. Certain types of pressure on their bodies or positions may evoke feelings of familiarity, much like certain smells can trigger emotions in people years after an event.'

One thing is sure, however. Although the twins and their separation will leave a lasting memory in the minds of all those here who participated in their care, no one is happier than their mother.

'Thank you for giving my girls normal lives,' said Arias. 'Thank you for opening the doors to your hospital, and to your hearts.'