Skylar's Legacy: Couple Facing Infant's Certain Death Makes Agonizing Decision

That's the same agency that helped with the donation of Skylar's liver. "If a child needs a liver transplant, and if you're able to give hepatocytes [liver cells]," she said, "it gives the child time to grow and possibly get a larger liver for that child."

Hackensack's Shapiro said, "It's not clear whether liver cells from a newborn might be more useful than those of an adult who wasn't a candidate to donate a whole liver."

While ethics and transplantation experts agree it's ultimately a family's choice whether to carry an anencephalic baby to term, they say that doing so or being encouraged to do so strictly for the purpose of donating tissue raises ethical questions.

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"If it's perceived that the child is being used as a means to an end; this becomes an ethical problem," Cronin said.

Regardless of the opinions of others, Kip and Shannon Brooks said they are at peace with their decision. They also say they're lucky, because they heard many stories of families in similar situations who weren't told they had the option to donate.

"They thought the only option was to terminate, and they had so much guilt and remorse," Kip Brooks said. "Every family has the right to choose what's right for them."

When asked if she has advice for other parents in similar situations, Shannon said, "Treasure every moment."

She also said, "We wouldn't do a thing differently. Those 99 minutes were worth everything we went through."

For more information on how to become an organ or tissue donor, visit the Donate Life America website.