Used with permission of THE PHILADELPHIA INQUIRER Copyright © 2007. All rights reserved.

 Posted on Sun, Oct. 28, 2007


Monica Yant Kinney | Small world, large hope
By Monica Yant Kinney

Inquirer Columnist

In a dimly lit room at Children's Hospital of Philadelphia, Jeanette Francis fumbled with a disposable camera.
She wanted one last photo before her 17-month-old daughter, Kassiha, had an operation on Thursday that would change both their lives.

Kassiha, regular readers will remember, suffers from Klippel-Trenaunay-Weber syndrome, rare tumors of the blood vessels. Her right leg was so gigantic, it literally anchored the youngster down.

Jeanette fainted after delivering Kassiha in their native Grenada. Nearly two years later, she's painfully aware that people stare at her otherwise beautiful baby.

Amputation of some, or all, of the limb was the only answer, explained John Dormans, chief of orthopedic surgery at Children's.

But how much of the leg would remain after the $81,000 operation paid for by Inquirer readers?

Jeanette dabbed tears from her eyes as Kassiha's lids drooped. The mother prepared her little girl for the unknown.

"I asked God to guide her and keep her safe," Jeanette told me.

"I told her, 'You're going to have a nice day.' "

"This procedure has the potential for a significant amount of bleeding," anesthesia fellow Paul Stricker warned Jeanette.

He said it twice, for emphasis. Then he explained epidurals, breathing tubes and central lines.

"There are risks associated with everything I just told you," Stricker added. "Any questions?"

Jeanette said nothing, even when Michelle Sagan, an orthopedic fellow on Dormans' team, spoke the prophetic words of the morning:

"He's hoping to save most of the leg and keep her heel so she can walk on it."


Function trumps looks
At 12:45 p.m., Kassiha was wheeled into Operating Room 18. Within minutes, she was sedated.

For two hours, doctors worked to install central IV lines, a tricky task with toddlers. At 3:30 p.m., Dormans scrubbed in as a Springsteen song played in the background.

You'll be coming down now, baby, you'll be coming down . . .

"She had a nice, well-formed heel that was, for some reason, spared of the tumor," Dormans explained after the hour-long surgery. "But she had this grotesque-looking tissue mass in front of it."

The dilemma was whether to remove just that deformed foot, or to amputate the leg at the knee.

"If we went at the knee, she would never walk on her own and always need a prosthesis," Dormans said. "Once you do that, there's no going back."

Leaving the heel would allow Kassiha to walk like other kids her age. But that meant saddling her with a leg that didn't look right.

"That's the hard part," Dormans conceded. "But function in life usually trumps appearance."


A surgical surprise
And so, the renowned surgeon decided on the conservative route. Dormans said what remained of Kassiha's leg would grow even larger as she gets older, making her at risk for infection.

He predicted that she would need another amputation - "probably at the knee or hip" - in several years, but assured Jeanette that he was committed to overseeing Kassiha's care even after they returned to Grenada.

In the end, he said, doing less now made the most sense for the child's safety and development.

"She'll be jumping and running on this leg," Dormans predicted.

Probably within a few weeks.

Jeanette, while grateful, struggled with the news. Part of her had hoped for a total amputation.

"Kids can be so cruel," the 37-year-old mother of six lamented. "She's going to grow up in a country where people may laugh at her."

Jeanette's sister, Raychelle Jeremiah, was equally disappointed.

"No matter what people say or do, this is your child," she told Jeanette. "You walk proud. You be strong for her. She didn't ask to be like this. She came into this world for a reason."

Jeanette was silent as she walked toward the intensive-care unit, where Kassiha was recuperating.

There, the mother's long face softened and a smile finally returned.

"She's comfortable. She's sleeping," Jeanette said, admiringly.

She pulled up the blanket and gently touched the bandage. Kassiha's leg may not be "normal," but it will no longer hold her back.


A compassionate coda
When I first wrote about Kassiha in September, it was to tell folks how small the world seems when a Germantown family takes in two Grenadians because suffering and generosity know no boundaries.

A month later, 923 Inquirer readers (and one Kansas City, Mo., foundation) had donated $86,093.08. The money just kept coming, and this week, the total crested at $115,000.

Even after Children's Hospital was paid for the surgery, Kassiha's medical fund at the National Penn Bank branch in Chestnut Hill has $34,796.70 in it to pay for follow-up care - and postage for all those thank-you notes to all those kind strangers.



--------------------------------------------------------------------------------
Contact columnist Monica Yant Kinney at myant@phillynews.com or 215-854-4670.
Read her recent work at http://go.philly.com/yantkinney.