HEBER SPRINGS After Katie Cox of Heber Springs gave birth to twins with heart disorders — a boy and a girl — a doctor told her the babies might not live to be 6 months old.
Now 2 1/2 years old, John and Carter are happy and holding their own — and Carter was honored Feb. 1 as part of the American Heart Association’s 2018 Go Red For Women Survivor Gallery.
The family, including Katie’s husband, Lance Cox, and the twins, met Gov. Asa Hutchinson at the ceremony, which was held at the state Capitol in Little Rock.
Carter’s photo was unveiled, along with those of the other survivors.
“It means a lot,” Katie said.
The toddler was not impressed. “She just kept saying, ‘I want my daddy; I want my daddy,’ and ran over to him,” Katie said, laughing.
Carter and John were born July 17, 2015, at Conway Regional Medical Center, where Katie is an emergency-room registered nurse.
Carter was diagnosed with Long QT syndrome, type 2, a rare disorder of the heart’s electrical activity. She was flown to Arkansas Children’s Hospital, where Dr. Srikant Das, a pediatric cardiologist, found out Carter was a twin and ordered an EKG on John, who was diagnosed with the same disorder. Katie said neither she nor Lance has the gene for the disorder, “so we think it’s a mutation.”
“As a nurse, I didn’t know much about it, honestly, and I should have, probably,” she said.
Katie said she was shocked to find out she was pregnant with twins, even though her grandmother is a twin.
“I had a normal pregnancy; I had a very good pregnancy. They told me I was high risk, but I never had any problems at all,” she said.
Her obstetrician, Dr. Josh Ward, put Katie on bed rest for about a week, and the twins were born at 34 weeks by C-section.
“I had some problems in the delivery room; I started hemorrhaging,” she said.
Carter got some fluid in her lungs at birth; she was given antibiotics and placed under an oxygen tent.
“John was doing better; they had him on oxygen,” Katie said.
“That was very scary; that was very scary,” she said. “You think everything’s perfect, and then you think what could happen.”
It got worse.
She credited an attentive Conway Regional Medical Center nurse for recognizing Carter’s condition.
“The nursery nurse was very on top of things and noticed [Carter’s] pulse rate had dropped to the 60s or 70 … and noticed she was in a second-degree heart block and had LQT … beating and then dropping beats,” Katie said.
In a second-degree heart block, some of the electrical signals “don’t get to the right places,” which means the heart won’t beat as regularly or as often as normal, according to Webmd.com.
Conway pediatrician Dr. Steve McNabb came to talk to Katie and Lance about what he had diagnosed.
“They had already called a helicopter from [Arkansas] Children’s to come get [Carter],” Katie said.
“It seemed like it kept getting worse and worse the more they talked to us,” Lance said.
Katie said she and her husband were scared.
“John was still here at the hospital, and I was still here,” she said.
“I was completely torn. I’m here at the Conway hospital with John; Lance flew to Arkansas Children’s with Carter. I wanted to be in both places, and obviously, you can’t,” Katie said.
An ambulance was sent from Arkansas Children’s Hospital to Conway to pick up John, and the twins were in adjoining rooms at Arkansas Children’s Hospital so Katie and Lance could go back and forth.
“It was very bad news,” Katie said. “He [Dr. Das] didn’t have the best of hopes for them at that time. John had a torsades de pointes arrhythmia; that’s a deadly arrhythmia. He went in and came out of it spontaneously.
“Carter had the second-degree [heart] block, and at that point, the doctor didn’t have high hopes they’d even leave the hospital,” Katie said. “I honestly was completely in shock.”
Lance recalled that Das told them, “50 percent of children [with this disorder] do not make it past the age of 1.
“It’s very hard to be told that when your babies have just been born; it’s devastating,” Lance said.
“I’m a nurse, and I like things to be told straight to to me, and that’s what Dr. Das does,” Katie said. “He didn’t sugar-coat things, and he didn’t make it sound horrific. He just told us the facts and the chance of survival. He was so sweet to us, though. He listened to us all and took the time to answer any and all questions. We love him.”
The twins stayed at Arkansas Children’s Hospital for about a week to 10 days.
“They wouldn’t let us go home until we had [an AED] (automated external defibrillator) to be with each of them at all times,” Katie said.
“The doctor said, “When you go home, just love them. Treat them as normal as you can, but give them as much love as you can,’” she said.
He was afraid they would die in their sleep, Katie said, adding that he told the couple he suspects that some SIDS deaths are actually caused by undiagnosed Long QT syndrome.
“Of course, I stared at the [baby] monitor for months and months and months,” Katie said.
“She stayed up nonstop for probably the first month,” Lance said. “She was scared to death something would happen in their sleep.”
The twins have not had any more heart episodes since they’ve been home.
They take a beta-blocker medication three times a day, and as long as the medication works, they will not have to have surgery, the couple said.
The twins’ condition can be triggered by “a startle effect, so we try to get people not to scare them,” Katie said.
She said the twins were going every six months to get EKGs, but now they only have to go once a year.
Katie said she has relaxed some, and she tries not to be overprotective. “We’ve tried to do everything normal,” she said.
She described John as “a mamma’s boy.” He’s kind of rough; then he’s the sweetest little loving thing ever,” she said. He was named for her late father, John Wright, who died in 2004.
“Carter loves baby dolls, and she loves horses and her dad — anything related to dad. She doesn’t want me getting her out of bed; she doesn’t want me to change her diaper,” Katie said. Carter was named for Dr. Todd Carter, a friend of Katie’s with whom she previously worked.
Lance, who works with his father at Larry Cox Construction in Heber Springs, said his children are “outgoing” and love to be outside. He said his dream is just for the twins to live long, normal lives.
“I hope they just grow up and be normal kids and are able to play sports and do whatever they want to do,” Lance said.
Some types of Long QT are induced by physical activity, Katie said, which is why sometimes a child will collapse playing sports. She believes all children should have an EKG before they play athletics.
“It’s a big deal to me to let people know [Long QT] happens, and the biggest way to know is to get an EKG,” she said.
Lance agreed. “I think everybody should realize that it’s only a $25 test, or an EKG, to get your baby tested. If everybody would realize it’s a simple test … they just hook them up to wires on their chest,” he said.
Cox said she keeps a positive attitude about the twins’ future, despite their diagnosis.
“It’s been crazy but amazing. It makes you think about things, especially that people go through things that you don’t know about. They look completely healthy and normal. You don’t ever know anybody’s story,” she said.
That’s why she’s honored for the chance to tell Carter’s and John’s stories.
Senior writer Tammy Keith can be reached at (501) 327-0370 or email@example.com.