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

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

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."

From Sadness to Joy

"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.

Dealing With the Scrutiny

Skylar's heartbeat convinced the couple to carry to term, and there were moments of happiness mixed with emotional and physical turmoil that lay ahead for the family, including son Jadon, 2.

"It was hard to envision going through the next few months knowing she was going to die," she said. "My husband and I held each other and prayed, and Jadon and all of us stayed close."

Throughout the pregnancy, Skylar's mother had to deal with excess build-up of amniotic fluid and had to be on bedrest.

They also had to deal with the scrutiny of others.

"People would ask me how I could let my wife go through this, and people didn't agree with our decision," he said. "People assumed that because I'm the father, I wasn't connected emotionally.

"I was also angry that people kept bringing up termination. I wanted them to stop suggesting that and give us time to process it," he said.

As time went on, he said, people became more supportive. His wife even had an "angel shower."

"I had all the guests write notes to Skylar on my belly," she said.

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