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

Couple facing baby's death chooses life to help others live.

ByKIM CAROLLO, ABC News Medical Unit
November 17, 2010, 11:23 AM

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.

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.

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."

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.

"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.

ABC News Live

ABC News Live

24/7 coverage of breaking news and live events