'Born with half a heart'

When Kali Kiecker, of Edgeley, is asked about her daughter’s heart condition, she says, “essentially she is born with half a heart.”
The same goes for Jackie Trautman, of Jamestown, whose 18-month-old son, Ian, is currently awaiting his third open-heart surgery.
Congenital heart disease consists of various heart defects that are present at birth. About 40,000 newborns are diagnosed with this disease in the U.S. annually, and 25 percent of those cases are critical, meaning they typically require surgery in the first year of life, according to the Centers for Disease Control and Prevention.
Congenital heart disease is also the leading cause of birth defect-related newborn illnesses and deaths in the U.S., according to the CDC.
Kiecker met Trautman online after reading about her son’s condition on a blog Trautman started.
The two have been support for each other when facing the difficulties of CHD.
For some families, like Trautman’s, the disease is identified in the womb. Trautman was devastated when she learned at 22 weeks gestation that her son, Ian, would be born with CHD.
Because the diagnosis was detected early on, doctors gave Trautman and her husband three options: surgery soon after the baby was born, palliative care or termination of the pregnancy.
“Not having him was never an option for us,” Trautman said. “As parents we deal with issues because we have to, because we are forced to. ... He (Ian) is truly our hero and warrior, I would do it all over again just to have him in our lives.”
Ian was born five weeks premature. Because of this, he spent his first month of life in the Neonatal Intensive Care Unit at the Children’s Hospitals and Clinics of Minnesota in Minneapolis awaiting his first open heart surgery.
Ian has hypoplastic right heart syndrome, which means the right side of his heart never fully developed. During his first two surgeries, doctors worked to redirect the circulation of blood flow to assure survival, soon Ian will undergo a third open-heart surgery.
“Just because they have surgeries, one thing that I’d like to say is that they’re never cured, it doesn’t cure anything,” Trautman said.
Trautman said she feels lots of different emotions knowing Ian has another surgery to go, but is hopeful to know that these surgeries are giving Ian the best shot at a normal life.
For other cases, like Kiecker’s child’s diagnosis, her daughter, Jozie, wasn’t diagnosed withhypoplastic left heart syndrome until after an emergency cesarean section.
“So we kind of missed six months of anxiety and worry,” she said. “Yet you’re totally caught off guard.”
After Kiecker awoke from the surgery, she said she was able to see her daughter for 10 minutes before Jozie was rushed to Fargo for further testing.
Kiecker described the next few days as “a blur,” and when Jozie began surgery her and her husband were in “survival mode.”
“My husband was a great support, and when we were in it, it seemed like he was weak when I was strong (and vice versa)” she said. “We were there for each other.”
After four open-heart surgeries, the first at 5 days old, the second at 7 months old, the third at 21 months old and the fourth at 2 and a half years old Jozie recently celebrated her eighth birthday, is a social butterfly and participates in T-ball and piano lessons, Kiecker said.
“She knows she has a special heart … she is doing amazing,” Kiecker said.
There is no known cause for congenital heart disease, according to the CDC.
“When Dr. (Rodrigo) Rios (Ian’s pediatric cardiologist) diagnosed him he told me there is nothing you did, nothing you could’ve done when his heart was forming,” Trautman said. “That’s just how it formed, and that’s all there is to it.”
Jozie and Ian take medication daily for their condition and see doctors for check-ups frequently. While Ian waits for his third surgery, it’s uncertain whether Jozie will have to undergo surgery again.
“If she would develop rhythm issues she would need a pacemaker, or a heart transplant,” Kiecker said. “That would only be if problems arise.”
Both Kiecker and Trautman are involved in support groups for those with congenital heart disease, including Project Carson, a support group for parents with children who have been newly diagnosed with a condition, Sisters of the Heart, a support group specially for parents with children who have hypoplastic left heart syndrome and Mended Little Hearts, a support group specifically for parents with children suffering from congenital heart disease.
Congenital Heart Defect Awareness Week is Feb. 7 to 14 nationally, and Jamestown Mayor Katie Andersen recently signed a proclamation prepared by Trautman to declare this week Congenital Heart Defect Awareness Week in Jamestown, too.
“I think it’s really important to recognize efforts that are being made to prevent diseases,” Anderson said. “It really meant a lot for Jackie to prepare the resolution because she had the motivation to do so and the personal experience to bring awareness to the community.”
Trautman and Kiecker urge new families to look for signs of congenital heart disease when their baby is born, including having oxygen levels read (a low oxygen level can be attributed to CHD, Trautman said), blue tints to their lips, toes or fingernail beds or shallow breathing.
“It’s always better to ask questions of your doctor and get them checked out, because the sooner the disease gets identified and the doctors can intervene, the better chance for your child,” Trautman said.
acremer@jamestownsun.com
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