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In Lives Apart, a Challenge

Parents of Separated Twins Face One Girl's Paralysis With Optimism

By Susan Levine
Washington Post Staff Writer
Saturday, January 8, 2005; Page B01

In their room of pastel-hued butterflies and ladybugs, Erin and Jade Buckles sleep in separate cribs now. Amid their happy squealing at bath time, they eye each other in a way they once could not: from a distance.

Six months after they were divided surgically at Children's Hospital, during a lengthy, complex operation that offered the conjoined little girls their only hope of normal lives, both are starting to explore the world. Last week, Erin rolled from her stomach onto her back. The next day, Jade figured how to maneuver arms and legs enough to tummy-crawl across the floor.

Melissa Buckles checks up on Jade, left, and Erin, who is largely paralyzed from the waist down, as the family travels to New York for television appearances. (Carol Guzy -- The Washington Post)

_____Photo Galleries_____
The Best Father's Day Gift Daughters of Melissa and Kevin Buckles are successfully separated.
One Surgery of Many The Buckles family prepares for the separation of conjoined twins Jade and Erin.
_____Special Series_____
'We're Going to . . . Just Enjoy Our Family' (The Washington Post, Jul 3, 2004)
Twins Go Home Today After Fast Recovery (The Washington Post, Jul 2, 2004)
Twins 'Doing Better Than Hoped For' (The Washington Post, Jun 24, 2004)
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Their parents recorded the exciting milestones just as they and doctors have noted major and minor events in the babies' development since long before their February birth. Nearly all are testament to the expertise of the medical team that gave the girls their freedom.

The sole exception is a still-mysterious event that might forever alter Erin's future -- so fleeting and subtle that even intense scrutiny of the operative record, through EKG tracings, blood pressure strips and the video of every cut and suture, has been unable to pinpoint the moment it occurred.

Its impact, however, is evident in the lack of movement of Erin's legs. Paralysis is something no one had anticipated but a hurdle that Melissa and Kevin Buckles are determined to help their daughter face with hope and fortitude.

"We celebrate all the little things," Melissa said, smiling toward her husband as their daughters, in matching pink rompers, alternately played, giggled and gurgled away a morning in the family's new home in Stafford County.

As much as the months preceding their surgery, the past half year has roller-coastered for the family between happiness and tears, optimism and acceptance. The girls' separation remains a major triumph by almost every measure. Sister Taylor, who is 3, explains the achievement succinctly: "They were stuck together, and the doctor fixed them."

Stuck, in their case, as in fused from mid-chest to mid-abdomen. Two hearts shared the same protective lining; a single liver functioned for both of them. Only a tiny fraction of conjoined twins survive to birth, much less past their first day of life. Many also die because of the effort to part them.

More than 100 doctors, nurses and technicians planned in extraordinary detail, for success or tragedy, before Erin and Jade were wheeled into their operating room at Children's on June 19. None of the contingency scenarios was needed.

Start to finish, there were no emergencies, and the tiny patients exceeded expectations for their recovery. They were weaned quickly off ventilators, their incisions healed without infection and on July 2, their elated parents settled them into individual car seats for the family's departure.

"They are two beautiful girls," chief of surgery Kurt Newman marveled the other day. And with the developmental gains each has made, he added, they are disproving traditional medical wisdom about the timing of surgery for conjoined twins.

"We may have underestimated them," Newman said. "There's more of an urgency to getting them separated than we ever realized."

Yet for all the flawless execution, sometime during the six-hour-plus operation, something apparently happened with Erin. The event lasted mere seconds, but that was enough. The MRI scan detecting it, taken Sept. 21 as parents' and doctors' concerns mounted, showed a narrowed, paler ribbon of spinal cord along the mid-thoracic vertebra. Whether a tiny blood clot in the area damaged tissue or whether the baby's spine was momentarily kinked because of positioning, impairing blood flow, might never be known. The consequence was the same: Erin is largely paralyzed from the waist down.

"It's part of the mystery of medicine," Newman acknowledged this week, his tone revealing how very bittersweet the aftermath now seems. The girls' spines were never thought to be at risk during the team's intense preparation. "We were about as far away from that, front to back, as you could be."

The upside, based on Erin's response to stimuli, is that the paralysis seems incomplete. "It is encouraging that we're not dealing with 100 percent," the doctor said. Combined with her young age and the physical therapy that began immediately for muscle strengthening, "I remain very optimistic as to how she's going to do."

Her parents are taking the same approach, although her mother struggled with sorrow when the baby's problem became clear. Melissa broke down on the phone when telling her own mother. Then, remembers Joan Ellens, the tears ended and Melissa moved on. "You know what, Mother?" she said. "We have two little girls, and they're alive."

The couple continues to allow a public window on their private experiences to help others facing the same challenge. It already has for a family in Pennsylvania, whose conjoined daughters were born in June and operated on in July. In a single week's sad span, first one and then the other child died. The Buckleses packed up and drove north for the memorial service.

That dual tragedy put Erin's loss in perspective. "It's a big deal, but it's not a big deal," Melissa decided. And in a wry twist of additional perspective, she and Kevin agreed: Better Erin, calm, deliberative and patient, than Jade, who has become the noisier, feistier twin.

For those reasons and others, no longer do their parents have trouble telling the girls apart. Although both are tracking each other in growth -- Jade weighs in a few ounces heavier as they near 14 pounds -- Erin's face is fuller. Jade reaches for Cheerios by the handful. Her sister uses a precise and focused one-O technique.

They keep their parents running and exhausted in ways neither Kevin nor Melissa imagined when feedings and diaperings were two-for-one exercises. "We were used to being able to deal with them at the same time," Melissa laughed.

The family, which includes Kevin Jr., a seventh-grader, moved from a three-bedroom townhouse in December. The larger home means a longer commute for Kevin, a Marine gunnery sergeant who travels extensively with the Marine Drum and Bugle Corps, but as medical bills climbed toward $2 million, they traded proximity for affordability.

The charges not covered by insurance worry them, although Melissa, 31, worries more than Kevin, 35. "Our concern is our family," he said. "We did what we had to do."

In the high-ceilinged great room where, atop the TV, the 21 videos of last June's surgery are stacked, Taylor and her sisters and giant Legos and rolling baby walkers will have plenty of space for years to come. "We're just trying to be a normal family," said Kevin.

Which means, on a wonderfully ordinary weekday afternoon, Melissa on the carpet, cooing in delight, as Erin waves her bottle toward her mother's mouth. And several feet away, a teething Jade, having traded a corner of a Lion King book for more satisfying sustenance, fast asleep in daddy's arms.

© 2005 The Washington Post Company


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