Being born early doesn't hold 'strong' West Point toddler back

May 7 2014 - 9:54am

Images

Ben Strong, 2, Tuesday, April 29, 2014 in his West Point home. (DYLAN BROWN/Standard-Examiner)
Ben Strong, 2, shows off his feeding tube Tuesday, April 29, 2014 in his West Point home. (DYLAN BROWN/Standard-Examiner)
Ben Strong, 2, tries to align the side rails of his wagon Tuesday, April 29, 2014, while his brother takes a breather in their West Point home. (DYLAN BROWN/Standard-Examiner)
Sophie Strong, 8, pushes her brother, Ben, 2, Tuesday, April 29, 2014 in their West Point home. (DYLAN BROWN/Standard-Examiner)
Brittany Strong smiles while talking about her son Ben Tuesday, April 29, 2014 in her West Point home. (DYLAN BROWN/Standard-Examiner)
Ben Strong, 2, Tuesday, April 29, 2014 in his West Point home. (DYLAN BROWN/Standard-Examiner)
Ben Strong, 2, shows off his feeding tube Tuesday, April 29, 2014 in his West Point home. (DYLAN BROWN/Standard-Examiner)
Ben Strong, 2, tries to align the side rails of his wagon Tuesday, April 29, 2014, while his brother takes a breather in their West Point home. (DYLAN BROWN/Standard-Examiner)
Sophie Strong, 8, pushes her brother, Ben, 2, Tuesday, April 29, 2014 in their West Point home. (DYLAN BROWN/Standard-Examiner)
Brittany Strong smiles while talking about her son Ben Tuesday, April 29, 2014 in her West Point home. (DYLAN BROWN/Standard-Examiner)

WEST POINT -- "Doggie! Woof!" says little Benjamin Noah Strong, pointing to a photo in a child's picture book.

Books are one of this 2-year-old's favorite things, along with toy cars, blocks and his pet cat, Oreo.

The toddler is so on-the-go in the living room of his West Point home, racing from one plaything to the next, that you might never suspect he's had a rough start during his first two years of life.

But Ben was a premature baby, born 12 weeks early in March of 2012. He battled a life-threatening intestinal disease at just 2 weeks old, and still struggles with lung problems and feeding issues. Ask to see his "button" and the toddler lifts up his T-shirt to reveal a feeding tube surgically implanted in his belly.

The intestinal necrotizing enterocolitis that made Ben so ill first hit his older twin brother, Samuel Lincoln, and took his life at just 13 days old.

"Our story's a happy one but it's also a sad one ... we lost one and got to bring one home," says father Jeremy Strong of West Point.

Awareness and prevention of premature births are the focus of the upcoming March for Babies Walk in Ogden, and Jeremy and Brittany Strong are serving as ambassadors for the event to share their story of twins Ben and Sam.

The whole family, including Sophie, 8, and Porter, 5, will take part in the 2-mile March of Dimes walk on May 10 at Fort Buenaventura in Ogden. Ben will ride in a stroller, but his mom says, "He probably could run the whole thing, as active as he is."

Before her twins were born, Brittany Strong says she -- like many people -- simply thought a premature baby was a small baby.

"I didn't realize the worlds of the NICU -- the alarms, the oxygen, the heart problems. I didn't realize how fragile it was," the West Point mother says.

Far-reaching problem

Nearly half a million babies are born premature in the United States each year, according to the March of Dimes, which sponsors the annual March for Babies walks nationwide. Preterm birth is the country's leading cause of death in newborns.

In Utah, 10.2 percent of all infants -- about 5,000 babies per year -- arrive too early, before 37 weeks gestation, says Julie G. Drake, director of program services for the Utah Chapter of the March of Dimes in Salt Lake City.

However, Utah improved to a "B" grade on the March of Dimes' annual Premature Birth Report Card last November, a better grade than the "C" the nation was awarded. In 2009, the Beehive State's premature birth rate was 11.3 percent, so progress is being made, Drake says.

The March of Dimes has set a national goal to lower the preterm birth rate to 9.6 percent of all live births by 2020, she says, "So we're working on that -- that's our next step."

Babies who are born early may face such challenges as breathing problems, developmental delays, intellectual disabilities, vision loss and cerebral palsy.

"I don't think until it affects you that it really matters," says Jeremy Strong, whose son Ben spent 11 weeks in the NICU at Ogden's McKay-Dee Hospital.

Brittany Strong adds that she's been amazed to discover how many people have a family member, friend or acquaintance who has been affected by a preterm birth.

"More people are touched by this than I even realized," she says.

Gone so quickly

The Strongs' first two children were born at full term, so the experience with twins Ben and Sam caught the parents off guard.

"We had every reason to believe we would have another full-term pregnancy," says Brittany Strong, who is a fraternal twin herself and says twins run in her family.

But a routine ultrasound at 24 weeks revealed the West Point mother's cervix was dilating and she was in early labor. Brittany was immediately hospitalized and, through the use of medication, didn't deliver her sons until four weeks later, which greatly improved their odds of survival.

Ben weighed 2 pounds 10 ounces at birth and Sam was 2 pounds 11 ounces. When Sam developed necrotizing enterocolitis, or NEC, at 12 days, it was a surprise because Brittany says, "He was actually the healthier of the two."

The disease causes tissue in the child's intestines to die off. Little Sam was flown to Primary Children's Hospital in Salt Lake City for surgery and the first report from the operating room was that things were looking good, Jeremy Strong says.

"Ten minutes later, they came back and said they were watching his bowels die and there was nothing they could do about it," the father says.

Not long after Sam passed away, the Strongs learned that Ben also had NEC. His case wasn't as severe; he pulled through the illness that time and also a second bout at the age of 6 weeks..

Troubles, blessings

Ben had digestive issues during his first year and needed to eat a special amino-acid based formula. Now, at 2 years old and just 20 pounds, he still requires a feeding tube to supplement his intake of table foods.

"He eats about 50 percent by mouth and 50 percent goes through the tube at night," Brittany Strong says.

The toddler also has a sensory processing disorder, meaning his nerves are underdeveloped and crave stimulation. He will run, spin, jump or even rub his head on the carpet or bang his head against the fireplace to get that stimulation; his parents counter with rhythmic motions like rocking or bouncing to calm him down.

"'He doesn't like shoes -- he hates socks on his feet." Jeremy Strong says.

Chronic lung disease is another problem for Ben; he has two nebulizer treatments every day to help him breathe and requires more if he catches a cold.

The 2-year-old may outgrow some of these health issues as he gets older, and his problems are minor in comparison to what some preemies face, his mother says, like heart surgeries or brain bleeds.

And little Ben seems blessed with a happy disposition.

"He's always smiling, he's always laughing, he's always keeps us laughing," Brittany Strong says. "He's going to be the class clown, we've decided. His goal is to make you laugh."

Helping others

Sophie and Porter haven't had any sibling rivalry and have welcomed Ben into the family, the Strongs say. The family talks about twin Sam all the time, Brittany Strong says, adding "He's a part of our family, regardless."

On the babies' birthday, the mother says she always finds herself thinking about Sam, too, or wondering, for instance, what he'd be doing or what kind of toys he'd like to play with.

"(Ben) is a constant reminder to us that there should be two here," she says. Husband Jeremy adds, "You see twins everywhere."

The birth of their sons has inspired Jeremy Strong, an office manager, to go back to school full time and study nursing, so he can one day work in a NICU.

The Strongs say they are supportive of research spearheaded by the March of Dimes into the causes and problems of preterm birth.

"Losing any baby is too many," Brittany Strong says.

Her husband says that the couple decided early on they would share their story to do whatever they could to raise awareness of preterm birth. As he explains, "It's one of the ways to maybe prevent it from happening to someone else."

Contact reporter Becky Cairns at 801-625-4276 or bcairns@standard.net. Follow her on Twitter at @bccairns or like her on Facebook at www.facebook.com/SEbeckycairns.

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