6-month-old still waiting for heart transplant - wistv.com - Columbia, South Carolina

6-month-old still waiting for heart transplant


Are you an organ donor? Have you ever thought about what would happen if someday you were on the transplant list?

A 6-month-old girl is in that position at MUSC. She needs a heart, and right now has an artificial heart keeping her alive.

The device, a Berlin Heart, is a rare device that has to be shipped to the hospital when needed.
Doctors say it often leaves patients in better shape for a transplant, but the waiting and not
knowing when that time will come can be difficult for any family.

Colleen Mullis blogs at the cribside of her 6-month-old daughter, Kathryn Ann. For the last 2 months, she's re-located from Columbia to Charleston's MUSC Children's hospital while her baby waits for a heart.

"When she was born she was a perfectly normal, healthy baby. Nothing had appeared," Mullis said.

With no indication then that anything was wrong, Mullis and her husband took their daughter home to join their 2-year-old son, Vann. For 2 months, they thought they had a healthy and happy little girl and family, but a pediatric appointment would change all that.

"She has something we call hydrotropic cardiomyopathy where the heart is very, very thick and very, very weak," said Dr. Minoo Kavarana, a pediatric surgeon.

Doctors say everything looked normal at birth and she had no symptoms, but then Kathryn Ann started having trouble breathing and her heart was having a hard time pumping and keeping her alive.

Little Kathryn Ann had to be put on a transplant list.

"When they realized Kathryn was on the ventilator, needing chest compressions and full blown
CPR, they understood the gravity of the situation," Kavarana said.

"They ended up putting in a Berlin Heart on Memorial Day and she only has one -- it runs the
left side of her heart. The right side is functioning. It's still sick and weak but it's still partially
functioning," Mullis said.

Kavarana has done four Berlin Heart procedures at MUSC in the last year. Kathryn Ann is the youngest being just 4 months old when the device was put in. She has to remain at the Pediatric Cardiac ICU until she gets a donor heart.

"It is essentially an artificial pump that takes over the function of the heart," Kavarana said. "It provides a bridge to a heart transplant. It's not a permanent solution by any means."

Because of Kathryn Ann's small size, Kavarana had to modify the pump to fit her heart.

"It was the best option," Kavarana said. "The other option would have been to do nothing, which some people elect to do because there's a high complication rate associated with it such as stroke, clots forming, even dying from the device. So it's not a decision easily made."

"There's no way she can't be here with us," Mullis said. "She's a fighter, and she wants to be here. She's fighting, so we're going to fight with her."

Kathryn Ann has done well on the Berlin Heart. Kavarana says her kidney and liver function have even improved as a result. He says, on average, patients stay on the Berlin Heart anywhere from 1 to 9 months, waiting for a heart.

"It's very difficult to wait," Mullis said. "Never know when you're going to get a call for a heart, and it's just something you think about every day, and it's hard to be thinking about why you'd be getting one."

"You have to learn that you can't prevent the tragedy. All you can hope is something really positive happens out of something so painful for somebody."

Mullis had never discussed organ donation with her family.

"Organ donation is a conversation that everybody should have whether you decide to do it or not," Mullis said.

"It made me realize, especially for children and those who can't speak for themselves, it's really a conversation you should have in advance."

"I don't know that people understand the full impact that it can possibly have that donating organs can save multiple lives, not just one."

For now, Kathryn Ann continues to be happy baby, growing and developing, waiting for the day someone makes the decision to give her a chance for a long, healthy life.

"Some people hope their child can change the world one day," Mullis said. "I know mine already has."

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