Akilah will remain hospitalized until she receives a transplant. Her parents visit daily. Her father, who is unemployed, often stays with her late into the afternoon.
"A lot of times we just stay at the [nearby] Ronald McDonald House so we can be close to her," said her mother, a customer service representative for Best Buy. "It's hard leaving her."
14-month-old Akilah Austin, with mother Lisa, is one of 78 children between ages 1 and 5 awaiting a heart transplant in the United States.
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A nurse stays by Akilah's side 24 hours a day to provide care and keep her entertained by singing songs, blowing bubbles and playing games to "minimize the psychological impact" of being hospitalized, Vricella said.
"Our job is to preserve her health . . . to get her in top shape before the operation in terms of nutrition and growth and freedom from infection," he said. "We're also concerned about clotting."
Statistics from the organ-sharing network show that 87,000 people are awaiting organ transplants in the United States, including 2,128 children. Last year, an average of 18 people on the list died each day. A child under age 5 died an average of every three days, the figures show.
"This situation brings attention to the critical shortage of organs that are available," said Annie Moore, the network's spokeswoman. "It's difficult to think about becoming an organ donor. We don't like to think about death. But seeing these stories and the sheer numbers of patients who are waiting and struggling out there" shows the need, she said.
Akilah, who weighs about 25 pounds, will need a heart belonging to a child between 15 and 33 pounds. The heart will be about the size of a golf ball, doctors said. The child also must share Akilah's O blood type.
If Akilah had a successful transplant, she still would face challenges. Babies with successfully transplanted hearts have a 75 percent chance of surviving one year and an 80 percent chance of living another five years, Vricella said. Some have survived into their teens. Akilah will have to take medications for the rest of her life, doctors said.
Last week, the Austins were tested to see whether either suffers from the condition that destroyed Akilah's heart. They are trying to figure out how to pay for their daughter's care because not all the costs will be covered by health insurance. A fund has been set up through the Children's Organ Transplant Association in Bloomington, Ind., on behalf of Akilah to help with expenses, relatives said. Donations must be made in the child's name and given to the association or any Wachovia bank.
Meanwhile, the family waits and prays. "We've just put it in God's hands," Lisa Austin said. "It's hard to think that another baby has to die to let my baby survive. . . . The hardest thing to know is that we're basically waiting for another baby to die."