On the day of Skylar's birth, the family was surrounded by other family members, friends, a midwife and doctors. "Jadon got to meet his sister, and he said how beautiful she was," she said. "And we held her and loved her. It was the best thing for us. We had some closure and were able to meet her."
After Skylar died, her liver cells were removed and donated to a company in Durham, N.C., that specializes in liver-cell preparations. But the couple was devastated to find out the cells couldn't be used for what the couple had hoped.
"We hoped they could extend the life of a baby waiting for transplants, but they didn't get enough of her liver cells to use in another baby," Shannon Brooks said. "They are able to use them for research."
While it may seem that organ, tissue or cell donations from an anencephalic baby aren't as fraught with ethical challenges as are similar donations from older people, medical experts say, the issue has been controversial for a long time. Much of the controversy arises from the definition of the word "death."
"It's still prohibited to use anencephalics as organ donors. One of the reasons is that anencephalics do not meet the dead-donor rule," said Dr. David Cronin, associate professor and director of adult and pediatric liver transplantation at the Medical College of Wisconsin in Milwaukee.
Experts say there are two definitions of "dead." One is to be considered brain dead, meaning there's absolutely no brain function, and the other is to be considered dead because all cardiopulmonary function has stopped.
"Anencephalics are not considered brain dead because, while they have no higher brain function, they do have some brain stem function," said Dr. Michael Shapiro, chief of organ transplantation at Hackensack Medical Center in New Jersey and chairman of the ethics committee at the United Network for Organ Sharing, the organization that manages the organ transplant system in the United States.
Even when babies with anencephaly die after their heart stops, the organs may not be viable.
"By the time that happens, organs have degraded to the point where they're not useful," Shapiro said.
It's possible to get tissue from anencephalic babies, but doctors are unsure how usable it would be.
"Some body parts and tissues that don't require oxygen can be used even after death and there's no blood flow, but the issues start to fail eventually," said Dr. J. Edward Spence, director of the clinical genetics program in the Department of Pediatrics at Levine Children's Hospital at Carolinas Medical Center in Charlotte, N.C.
Liver cells can be used but experts disagree about their value from anencephalic babies.
"The yield in neonates is very good. Procurement of the organ is very quick, and the tissue has great regenerative capacity," Wisconsin's Cronin said. "If we could get enough liver cells to be viable and plant them into certain types of recipients, a whole variety of diseases could be treated without liver transplantation."
Cynthia Willis, an organ-recovery coordinator at Charlotte, N.C.-based LifeShare Of The Carolinas, an organization that helps procure organs for transplantation, said, "It's a bridge to transplant."