Monday, April 20, 2009

Why I march...

This story about Colton and March of Dimes was in the Thursday State Journal.

While most mothers bring their babies home shortly after birth, Crystal Darnell waited an excruciating 172 days before her son, Colton, could leave the hospital. And worse, on the day of Colton's birth, doctors gave him a 10 percent chance of living. Born four months early, Colton's miniature body was seriously underdeveloped, and a bleeding in his brain would permanently take away his eyesight.

"He looked like a snickers bar with arms and legs," said Darnell. Seventeen months after Colton's surprise birth, Darnell, 23, sometimes wonders what it must have felt like for him to spend his first six months in pain, often on the verge of death. "He amazes me," she said on a recent afternoon during Colton's physical therapy. "He's such a fighter. He had to fight to make it, but that doesn't get him down. He's so happy to be here."

Colton, who has grown from one pound and four ounces to 17 pounds, giggles and feels his toys with his mouth. Whenever he hears his mom's voice, he moves his head in her direction. He loves the sound of her voice - that voice that prayed over him and whispered to him from the other side of his incubator. "Colton, I love you, and I need you to hold on," she told him on day 10. "I know it's hard, but God is with you, and he can help us all through the tough times."

It's Darnell's harrowing experience that involves her in the March of Dimes. Research, largely funded through the March of Dimes, is crucial to keeping preemies like Colton alive, she says. "Forty years ago, there wouldn't have been much of a chance for him," she said. The March of Dimes is the leading fundraiser for research into the causes of premature births. The national walking event has raised $1.8 billion since 1970, according to its Web site.

Another goal is to raise awareness that premature birth is the leading cause of newborn born death and many lifelong disabilities. While rates have improved drastically over the last half-century, one in eight babies is born prematurely, according March of Dimes statistics. Walks are held nationwide to remind teams to raise money.

The Frankfort March for Babies will be Friday (for state employees) at the Capitol and Saturday at Lakeview Park (for community members). "State employees have been really generous to us," said Megan Jones with the March of Dimes. "We decided to have an extra walk for them since so many come from cities around the state." Last year, the walk raised $102,000 - much from state employees, Jones said. She expects more than 300 to participate in both walks. "Anyone is welcome to come to either walk," she said.

Colton's team is made up of his parents, grandparents and their friends. They are walking Saturday and hope to raise $500. "These are very serious, life-threatening issues," Darnell said. "If it wasn't for the hospital - and God - I wouldn't have Colton." Doctors determined that an E. coli infection caused Darnell to go into labor prematurely. She was rushed to the University of Kentucky Medical Center, where she gave birth to Colton, who was a meager 12-inches long. A team of specialists kept him alive at UK's Neo-natal Intensive Care Unit.

Over several months, Colton received countless surgeries and blood transfusions. There were days doctors thought he wouldn't make it, Darnell said. She and her husband, Seth, watched him through his incubator and asked God to spare his life. Because she could not hold her baby, Darnell wrote to him in her journal. Nine days after his birth, as she sat watching his monitors, she wrote, "Right this second your numbers are jumping up and down - I'm trying not to look. It drives me crazy when you do that. You're still doing it. I want to pull my hair out Stop, please. This is so hard, but I know it's even harder on you. I'm so sorry, I wish I could make it all go away for you we just both have to be strong."

Colton did what his mother asked, and was finally well enough to go home on Powhatan Trail on May 14, 2008 " a day filled with "emotion and lots of tears." "When we left the NICU, all the nurses gathered around and took pictures with us. Then everyone clapped as we left it was like a scene from a movie," Darnell said.

Today, Colton is learning how to crawl and stand and speak. He has learning delays because of his blindness, but physical therapists are helping him work around it.He adores his dad and can endlessly prattle "da, da, da." He loves music, eating and exploring anything with his mouth.Saturday, Colton will complete the walk in his stroller as he takes in the beautiful sounds of life."He loves being outside," Darnell said. "He can't see, so he raises his hands in the air and feels the wind. He likes the way the wind feels in between his fingers."

The SJ did a wonderful job with the article. However, Colton's blindness is not caused by his IVH or "brain bleed" as she put it. Retinopathy of Prematurity (ROP), a disease that is very common in preemies, was responsible for his vision loss.

As stated in the article TEAM COLTON participated in our local March for Babies for March of Dimes this weekend. We raised a little over $500.00, we reached our goal! I am so thankful to everyone who donated and/or walked with us.


  1. Crystal:
    What an amazing journey you have had with Colton. Kudos to your strength, I know how difficult it can be and the challenges you will continue to face. Continue to stay positive!

  2. Sweet little Colton, if I could be 1/10th as brave, strong and determined to live and love as you I'd be able to move mountains. You, my handsome little man, are a gift from God.