Miracle child survived the odds

Lilly is 9 years old.

On July 26, she was injured in crash at Route 1 and Wilkins Road and her limp body was flown to A.I. duPont Hospital for Children in Wilmington. Lilly was unresponsive; she had broken ribs, collapsed lungs, a bruised liver and a severe brain injury.

Doctors and her parents carefully watched the pressure on her brain. If it got too high, they would have to open her skull. Lilly’s good lung collapsed, and the oxygen in her blood went down; she was placed on an oscillator ventilator to increase the oxygen in her lungs. Then so much fluid accumulated in her small body, it distended her stomach.

“She was so swollen,” recalled Kelly Barnett, Lilly’s mom.

Lilly was still unresponsive when she underwent emergency operation to open her stomach and drain the fluid. Lilly remained unresponsive, in a coma.

Lilly has been diagnosed with diffuse axonal injury in the brain. It is like shaken baby syndrome, but it occurs in an older child. The cognitive part of her brain, where learning takes place, was cracked and torn.

“The brain does reconnect, but it can reconnect in a different pattern. It is just a waiting game. It can take up to seven years to know where Lilly will end up with any limitations,” Kelly said.

The longer someone is in a coma, the harder it is for them to come out. For 18 days, Lilly remained unresponsive. Finally, her eyes responded to light; two days later, her fingers squeezed around her mother's hand.

Good news is that Lilly was not paralyzed. She had only strained ligaments in her neck, and over time her insides have healed.

A family's life changes

Lilly’s parents, Kelly and Bryan, try to stay positive. Their life and everyday schedule has changed since the accident. Kelly had to leave work to stay with Lilly and take care of her younger daughter, Summer.

“Bryan's work has been very supportive. He was able to transfer to Justice of the Peace Court 11, and he still works in the city of Wilmington as a state constable,” Kelly said.

Lilly’s grandparents try to help in every possible way, and many others support the Barnett family.

Kelly drove to Wilmington nearly every day to be with Lilly and later made the same long trip back home to take care of Summer. Bryan stayed in Wilmington, managing his work hours so he could be with Lilly as much as possible.

Even miracles take a little time

The child who for weeks lay motionless in a deep come has come a long way. She now can walk with a walker, speak and respond to everything around her. Her feet still need braces to keep them stable, and her left arm and hand tend to tense.

“Lilly has issues swallowing sometimes, but now she is eating on her own and can eat anything,” Kelly said. “We are also dealing with her throwing up about once a week. So she is going to go to surgery to check her stomach to see if there is any damage.”

As for Lilly’s brain, healing is a slow process, Kelly said. Lilly remembers everyone and everything from her past, except the week before the accident and the day the accident occurred. Of that day she has no memory at all.

Her short-term memory is compromised; she often asks the same question over and over, such as, "What are we having for dinner?"

“Lilly’s short-term memory is not 100 percent gone, maybe about 50 percent, but the doctors say it does come back. Everything is a matter of time at the moment,” Kelly said.

There’s no place like home

Lilly was in the hospital from July 26 through Dec. 19, when she was finally allowed to go home. “Lilly was so happy to be home. We feel it helped her become more alert and give her a desire to do more,” Kelly said.

“Lilly likes to be in every room. She loves being with our three labs and miniature dachshund. She also loves being outside, checking the mail, feeding the chickens and playing with Summer,” Kelly said.

Four days a week, Lilly has physical, speech and occupational therapy at A.I. duPont Hospital from at 9 a.m. to 3 p.m. She has pool therapy one day a week, and for one hour a day, Lilly goes to school at the hospital.

Kelly, Lilly and Summer get up about 5:30 a.m. every day. They drop Summer at Milton Elementary School about 7 a.m., pick up Lilly’s grandmother and drive to Wilmington for Lilly’s therapy.

“Many people help us with the pickup of Summer. Between family, friends, neighbors and the school, we work it,” Kelly said. “Summer loves to help and at times feels like she is the big sister. She loves to push Lilly wherever she needs to go and is her butler as they joke.”

Back to school!

Lilly returned to Milton Elementary School March 9 and now attends school one day a week. “She was so excited to see her friends, teachers and staff. Lilly is doing a full day while she is there,” Kelly said.

Kelly’s mom, Lilly’s grandmother, stays with Lilly all day while she is in school, helping and supporting her.

“Milton Elementary School has been a blessing. All of the staff and students have welcomed Lilly back and made us feel so comfortable in this process,” Kelly said.

“Lilly was all smiles. She said she was tired but still smiling,” said Kelly, smiling herself.

Lilly received a Distinguished Student Award March 7, along with other students, for her success in last year’s state tests in both reading and math.

“It was nice to be included in the award and get it,” Kelly said.

Miracles happen to those who believe in them

“I am still not working, which is a little hard financially, but my husband is working – thank goodness for that,” Kelly said.

As soon as people knew about what happened to Lilly, they organized fundraisers to help the Barnetts with the bills, which have topped $1.2 million. Lilly’s parents are thankful for kindness, support and prayers of people in the community, many of them strangers.

Kelly said money might be a struggle at times, but “Lilly is rocking – that’s all that matters.”

“For now, I just need to work for Lilly. It’s worth everything. Lilly is our shining star, and we need her in our life,” Kelly said.

Young author shares success with Lilly

McKenzie Betts, 9-year-old author of "Blue Bear Finds a Rainbow," will be in Rehoboth Beach for a book signing at 1 p.m., Saturday, April 7, at Browseabout Books.

The event will provide the public with a chance to meet and speak with young author McKenzie, buy her book and have her sign it. A portion of the proceeds from the sale of each book will go to Lilly Barnett. Lilly is expected to make a special appearance during the book signing.

Browseabout Books is located at 133 Rehoboth Ave., Rehoboth Beach.

For more information about Lilly Barnett visit her site at www.caringbridge.org/visit/lillybarnett