Waiting for a heart: High-tech pumps keep little girl alive in meantime

Robert Porter holds his daughter Morgan Porter’s hand as she dances with excitement while getting a kiss from Spring, a pet-therapy dog held by owner Mary Evans. Porter has a Berlin Heart and is waiting for a heart transplant.

Three-year-old Morgan Porter is waiting for a new heart. Her mother tells her that God is sending it in a box.

When she gets it, Morgan wants to go to Disney World, the South Carolina Aquarium and the grocery store, for starters.

In the meantime, she is kept alive by German technology that the U.S. government specially approved for use in her case.

The Berlin Heart is a ventricular assist device that uses external pumps to take blood directly from the atria and pump it to the lungs and the body, thereby taking the load off the heart's ventricles. The device was invented to replace children's failing hearts until donor organs are found.

The treatment still is considered experimental in the United States. The Food and Drug Administration approves use of the device case by case on humanitarian grounds, said Dr. Minoo Kavarana, who implanted the Berlin Heart. He is an assistant professor of surgery and pediatrics at the Medical University of South Carolina.

Morgan is being treated in her fifth-floor room in the MUSC pediatric intensive care unit. Her space there includes a Christmas tree and Snow White pillows on her bed. A new pair of "Hello Kitty" pajamas arrived this week.

"Mimi sent you them," said her mother, Sarah Porter.

"Can I wear those tonight?" Morgan asked.

After nearly five months at the hospital, the Porters, of Lady's Island, have settled into a daily routine as they await a donor heart for their daughter. The goal is to get her in the best physical and emotional shape possible for a transplant, said her father, Marine Corps Maj. Robert Porter. He is a fighter-jet pilot who served in Operation Enduring Freedom and Operation New Dawn.

"It could be anytime. That's just one of the things we don't know," he said.

Morgan, the first of their two children, fell ill with flu-like symptoms in late July after a weekend family trip to Charleston. Doctors said her heart was not pumping properly, and it was a life-threatening situation. She needed a transplant.

Today, her condition is stable and she is a lively, chatty little girl thanks to the Berlin Heart.

On Wednesday, Morgan visited the first floor of the hospital where she hugged dogs dressed for Christmas. She laughingly corrected some adults who asked if she was staying on the fourth floor. Nope, the fifth floor, she told them. Her father trailed close behind her pushing a cart with an open laptop computer on top. Moving lines squiggled across the screen. Two clear tubes running out from under Morgan's shirt tethered her to the cart.

The cause of her heart troubles is unknown.

"Basically, her heart was not pumping well," Kavarana said. Sometimes it's a virus, but in Morgan's case the reason could not be pinpointed, he said.

Morgan initially was placed on a temporary life-support system that required her to be heavily sedated. On Aug. 4, she received the heart device.

"Since then, she's done very well," Kavarana said. She is on a regional waiting list for a heart transplant. "The quicker she would get a heart, the better," Kavarana said.

When Morgan first became ill, the family pediatrician in Beaufort said her heart was slightly enlarged, and he referred her to MUSC. The family went there the next day. She was quickly admitted to the hospital.

"It was definitely an emotional roller coaster, to say the least," Robert Porter said.

Tears formed in Sarah Porter's eyes as she talked about the situation. One moment their daughter seemed perfectly healthy. Then doctors were talking about a new heart.

But both parents praised MUSC.

"It's tough, but everybody here makes it a little easier," she said.