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

Nov. 19, 2010— -- Ninety-nine minutes.

Skylar Brooks lived her entire life in the time it takes many people to watch a movie, take an extended lunch break or do household chores.

In doing so, her parents say, she did her part to help other infants and children in need.

She was born Aug. 7 at 4:21 p.m. at the Lake Norman Regional Medical Center in Mooresville, N.C., and died 99 minutes later.

"Her birth was the best day of our lives," mother Shannon Brooks said. "She will be a part of us, and we will love her forever."

Skylar was born with anencephaly, a birth defect that causes a baby to be born with a large portion of the brain missing. It occurs in about one in 1,000 babies, and it's a diagnosis that means certain death in a matter of hours or, at most, days. Parents in this situation must make an agonizing choice: End the pregnancy or carry the baby to term, knowing their child will die shortly afterward.

Shannon Brooks and her husband, Kip, found out in advance about Skylar's anencephaly but wanted to see their baby and, after her death, donate whatever organs or tissues they could to help save another child's life.

"I was pretty sure before that I wanted to terminate, but hearing her heartbeat was like a switch," Kip Brooks said.

To help deal with the shock and grief, the parents went online and found inspiration in the stories of other mothers and fathers of anencephalic children, and Kip Brooks did all the research he could on organ donation.

"I became obsessed with the organ donation part of it," he said. "I knew it was the right thing to do for us."

"We got the diagnosis on March 5," Shannon Brooks said. "We actually had a 3-D ultrasound and it was to find out if the baby was a boy or a girl."

Later that day, they got the call that changed everything: They found out their baby had anencephaly. A few days later, the diagnosis was confirmed.

"We were in shock and confused and didn't even know how to spell it," she said.

The couple didn't have much time to make that difficult choice between termination and carrying the baby to term. Shannon was already 19 weeks along and abortion is illegal in North Carolina after 20 weeks.