Kyle Stacy, born Dec. 14, 2005 at 28 weeks. His original due date was March 6, 2006.| Photo provided
Updated: December 11, 2013 6:15AM
At 26 weeks pregnant, Lisa Stacy was admitted to the hospital and told sobering news.
“They told me my son had a 50 percent survival rate,” said Stacy, 32, of Highland.
Imagine being given those odds, not about a sporting event but about your first-born child.
Kyle was born two weeks later, severely premature, spending his first 105 days in the neonatal intensive care unit. There, he barely clung to a shot at life.
He underwent four surgeries, to remove cysts and scarred tissue in his larynx and esophagus from being intubated as an infant. He also suffered respiratory distress and was diagnosed with kidney stones at the age of 2 months.
“For at least 80 of those 105 days, we were not sure he would make it through the night,” Stacy told me. “I remember receiving a phone call in the middle of the night to ask for permission to do a spinal tap, and after hanging up the phone, I broke down.”
Her husband tried to reassure her, saying, “Just think about going to watch him play Little League and we will get through this.”
Stacy recalled, “I truly wasn’t sure we would get to see that happen.”
Sure enough, their fragile “two pound miracle” pulled through, thanks to modern medical miracles.
Within a year, Stacy became pregnant again and was told it was “very likely” a similar pregnancy and premature delivery would take place. That’s exactly what happened, 18 months and one week after Kyle made his very early debut.
His baby sister, Madilyn, arrived eight weeks early, spending her first 28 days in the NICU, learning how to do things most parents take for granted.
“Most babies are born with the natural ability to eat,” Stacy told me. “My daughter was not.”
Madilyn had to learn how to eat, and also had to overcome her premature respiratory system, a common complication for preemies. To do this, she and her big brother both received surfactant therapy, a synthetic substitute for a substance full-term babies produce on their own.
Babies born with respiratory distress syndrome struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing.
The March of Dimes, through its grantees, helped develop surfactant therapy, introduced in 1990. Since then, deaths from RDS have been reduced by two-thirds, according to the organization.
“Without this treatment, it is very doubtful either one of my children would have survived, largely due to strides made by the March of Dimes,” Stacy said.
I learned about Stacy and her two children — who today are both healthy — after giving a short speech at the organization’s recent fundraising gala. I was asked to do so and, frankly, I wasn’t sure what to tell the hundreds of guests at the upscale event at Avalon Manor in Merrillville.
I knew the March of Dimes’ mission is to improve the health of babies by reducing preterm birth, birth defects and infant mortality.
I also knew that the state of Indiana was honored last Friday by the March of Dimes’ prestigious Virginia Apgar award, for reducing pre-term births by more than 8 percent between 2009 and 2012.
Apgar, who died in 1974, was a doctor best known for developing the APGAR score, a system used worldwide for evaluating the physical condition of newborns at birth. I remember hearing this very special score when both of my children were born.
But not all babies receive healthy Apgar scores. As a journalist, I’ve attended too many funerals for infants who didn’t make it to even their first birthday.
Earlier this year, I attended yet another funeral for a baby girl who lived only 10 weeks. Her name was Ava and her tiny, angel-white casket was flanked by blooming flowers that lived much longer than she did.
The casket’s lid sat to the side, adorned with handwritten good-bye notes from family, friends, and mourners. “We’ll always love you...” one said. “We’ll miss you...” said another. “It was an honor to be your auntie...” another one proudly noted.
Baby Ava was born with an undetected heart defect. In other words, a ticking time-bomb in her tiny chest. It detonated on Feb. 14, Valentine’s Day, I told the audience.
Ava’s mother told me, “Just a week earlier, we were at home thinking everything was fine. I was planning her life as any mother would. And then this happened.”
While staring at her daughter’s casket, the mother told me if Ava’s health condition was detected or diagnosed earlier, she may have survived. I asked if she knew about the March of Dimes and she gave me a puzzled look, so I didn’t press her about it.
Afterward, I did an archive search for my previous columns on the March of Dimes. But I couldn’t find any. Not one. I confessed this to the guests at the fundraiser, which was held to also celebrate the organization’s 75th anniversary.
“I want to write a column on the March of Dimes, its timeless mission and tonight’s timely honor,” I told the crowd. “But I need the help of someone in this audience. I’d be honored to tell your success story.”
The next day, Lisa Stacy contacted me, proud to share her story about Madilyn, who’s now 6 and quite spunky, and Kyle, who turns 8 next month.
“Not only are we lucky enough to have seen him play Little League, but this past summer Kyle was selected to play on the All-Star team,” said Stacy, who is now on the board of directors for the March of Dimes.
“If it was not for the March of Dimes’ research and development of surfactant, they would not have had a chance at life. Kyle surely would have only survived a few minutes without it.”
That, I say, is a true success story.
Connect with Jerry at email@example.com, 713-7237, or Facebook, Twitter and blog, at jerrydavich.wordpress.com.