BY KAREN GARLOCH - STAFF WRITER | Charlotte Observer
If you watch the Rose Bowl parade on New Year's Day, look for the Donate Life float.
On board will be a Lincoln County father whose story you'll remember.
Michael "Kip" Brooks and his wife, Shannon, were subjects of a four-part series in The News & Observer in November about their decision to give birth to a baby who was diagnosed with a fatal birth defect when Shannon was four months pregnant.
Skylar Tianna lived 99 minutes after she was born Aug. 7 at Lake Norman Regional Medical Center. Their story touched many of you. And the donation of Skylar's liver for research will help people with liver disease.
Kip will be one of about 30 people from 17 states riding on the Donate Life float. And he'll be carrying a photograph of Skylar.
"In her extremely short but extraordinary life, she helped change (organ and tissue) donation forever, " Kip said. "All parents want their kids to change the world. Our angel is doing just that."
One of the reasons Shannon and Kip chose to give birth to Skylar, instead of terminating the pregnancy as many parents would, was to donate her organs to help another family.
But they soon learned donation wasn't an option for babies with anencephaly, a birth defect that occurs in the early days of pregnancy when the brain fails to form completely.
The problem is that organ donors must be declared brain dead. But babies with anencephaly have at least partial brain stems that sustain breathing and heart rate. So they don't meet the brain death criteria.
Kip persisted, sending hundreds of e-mail messages to doctors, nurses, hospitals and transplant agencies.
Eventually, he got good news from Cynthia Willis, an organ recovery coordinator at LifeShare of the Carolinas, the agency that arranges organ and tissue donation in the Charlotte region.
Even though the Brookses couldn't donate Skylar's organs, they could donate her liver cells to Cytonet, a Durham company that processes the cells for transplant or research.
Because of Kip's efforts, LifeShare has begun offering tissue donation to all families of terminally ill infants. Since Skylar's death, four other Charlotte-area families have donated tissue from infants who died. And Willis has been invited to speak about the change to transplant professionals around the country.
"If you had not pushed us, we wouldn't be doing this," Willis told the Brookses. "What you've done and what Skylar has done is huge, and it will save lives."
Willis also nominated Shannon and Kip to represent organ and tissue donors on the Rose Bowl float. They were chosen among nominees from 24 agencies across the country.
The Brookses plan to leave Denver, N.C., Wednesday to fly to Pasadena, Calif., for a four-day expenses-paid trip sponsored by LifeShare and Cytonet. Only one of them can ride on the float, so Shannon suggested Kip; she'll be watching from a special VIP seat.
They'll help decorate the float and be honored at receptions. But most important, they'll share Skylar's story again with reporters from around the country.
"They're an incredible family," Willis said. "This is an opportunity for them to end the year celebrating and honoring Skylar's life..