Mom promotes awareness of congenital heart defects

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Feb. 7-14 is Congenital Heart Defect Awareness Week in Virginia


FRIES — After hours upon hours of waiting and worrying, Emily and Johnathan Moretz received the news that they had been praying for.
Their youngest daughter, Peyton, was out of surgery and doing fine.
Not only was she fine, but the next day she was rolling over in bed  — something she had never done before.
Three or four days later, she was sitting up and smiling.
“She was a different baby. In just a couple of days, she’d gone from lying still to... that!” said Emily Moretz, grinning as she remembered Peyton’s dramatic change following her open-heart surgery. “The doctors were all saying, ‘She’s got a lot of fight in her.’”

Peyton Cheyenne Moretz was diagnosed with Tetralogy of Fallot — a congenital heart defect that causes an improper flow of blood through the heart — when she was only seven days old. So far, she has been through two successful open-heart surgeries.
As Peyton continues to fight and grow stronger, Emily Moretz has started her own fight to bring as much awareness about congenital heart defects to as many individuals as possible. “I hope that someday, no one has to be as surprised as I was to find out that my week-old daughter was so sick,” she said.
After petitioning Gov. Bob McDonnell, Moretz received a signed proclamation that recognizes Feb. 7-14 as Congenital Heart Defect Awareness Week in Virginia.
Moretz said that when she names her daughter’s condition to people, their typical reaction is, “What is that?”
That was the same question that Moretz had when Peyton was first diagnosed.
Peyton was born on Sept. 28, 2011, at 11:30 a.m. She weighed 7 pounds, 15 ounces and measured 20 inches long. To everyone, she seemed like a perfectly healthy baby, and no one suspected that she was sick.
It was during a check-up one week after she was born when Dr. Robert Lazo first noticed a heart murmur. Concerned, he immediately referred them to Dr. Joelle Miller at Carilion in Roanoke.
After running some tests, Miller requested that they discuss what had been found. “I was thinking, ‘this can’t be good,’” Moretz said.
Miller explained the heart defect, and estimated that Peyton would be six months old before she would have to undergo any kind of procedure.
Peyton had three different heart malformations, including a narrowing of the right ventricular outflow tract, a hole between the two bottom chambers of her heart, and an overly muscular right ventricle. She also had two additional heart anomalies, including a stenosis of the left pulmonary artery and a right-sided aortic arch.
To fix the problems, a series of procedures would have to be performed. A special shunt would be inserted to help control the flow of blood through her heart and bring her oxygen to a healthy level. From there, total surgical repair would involve re-sectioning the muscle in her right ventricle to relieve the outflow tract, and repairing the VSD with a Gore-Tex patch.
With total repair, 90 percent of patients develop a leaky pulmonary valve as they grow into adulthood.
“Peyton first got sick when she was three weeks old,” said Moretz. “She started having ‘tet spells.’”
Tet spells are a result of an increased resistance to blood flow to the lungs, and increased flow of desaturated blood to the body. These spells are dangerous as they can cause brain damage, and are potentially fatal.
After measuring her oxygen levels at 69, Peyton was rushed to the emergency room at Twin County Regional Hospital and then flown to University of Virginia Children’s Hospital.
“No one was allowed to go with her. It was a four hour drive for me and my husband,” said Moretz.
When they arrived, Peyton seemed to be in a better condition, but later that night, her oxygen levels dropped to 32. “She was blue, like a grayish... purple-blue,” Moretz recalled. “They pushed me out of the way, got her to the pediatric intensive care unit, and sent me a chaplain because they thought my daughter was going to die.”
The doctors administered four to five units of morphine to bring Peyton out of the spell.
She received her first surgery on Oct. 21.
“The first surgery was the worst,” said Moretz. “She was only 10 pounds, if that.”
Peyton had a second surgery before her first birthday.
However, March 1 will mark a full year post-op. Doctors are hopeful that she will only need one more surgery, but it is unknown when it will take place.
“She still has a pulmonary stenosis, she still has a leak...” Moretz said.
To keep any chance of infection away from Peyton’s heart, Moretz has to give her antibiotics before any type of procedure is done. “When she goes to the dentist, she has to have an antibiotic before they can do anything. Any infection could go to that patch,” she said.
When asked how Peyton is today, Moretz smiled.
“She’s my wild child,” she said. “She messes, she throws tantrums where she lays in the floor and just gasps.” Moretz let out a sharp breath of exasperation as an example.
“Bryant [Peyton’s brother] will come to me and say ‘she’s having a fit!’”
Peyton is also very independent, and is already capable of entertaining herself with her Barbies and baby dolls. She loves “Mickey Mouse Clubhouse,” which she watches every morning while she eats breakfast. One of her favorite things is a blanket that she carries everywhere.
Terry Funk, Moretz’ mother and Peyton’s nanny, cried as she remembered the obstacles that the family has overcome. “You realize that life is short, and you don’t have promises of tomorrow. Every time you hold them, you wonder if it’s the last time.”
“It doesn’t feel as much like that now,” Moretz reassured her mother.
She admitted, however, that Peyton’s condition was completely life-changing. “I’ll see a child running in the park, and I’ll sit there wondering if she will ever be able to do that.”
Notable cases of people with Tetralogy of Fallot, like Olympic gold medalist Shaun White, make the goal seem less impossible.
Moretz’ family has been a great source of support for her. Peyton has four grandparents; Emily’s mother, Terry Funk and father, Terry Lee Funk; and Johnathan’s parents, Charles and Pamela Moretz.
Peyton also has two older siblings: Bryant, age six, and Elina, age five.
The sibling dynamic, Moretz says, is wonderful. “They do a great job taking care of Peyton,” she said. “They always ask where she is just as soon as they come home. They give her whatever she wants, down to the last cookie... they have so much love for her.”
Moretz also noted how important it was to have qualified and compassionate doctors. She expressed her appreciation of Dr. Lazo, Dr. Miller and Dr. James Gangemi, Peyton’s surgeon.
The community also lent a hand when the family put out donation jars that helped pay the medical bills. “You would be so amazed at how God and this community has helped,” said Funk.
Hundreds of dollars were given from individuals and several generous donations were made by local churches.
Because of her experience, Moretz decided to raise as much awareness about the many different kinds of heart defects that exist.
To prepare, Moretz made a series of red T-shirts with “CHD Awareness” on them. “Last year, I sent Bryant to school wearing one. The teacher asked me what it was for, because when Bryant was asked, he kept saying, ‘my sister.’”
Moretz hopes that by encouraging others to wear red this week, children like her daughter can be honored and the word about heart defects will spread even further.
Not finished with her outreach, Moretz is also supporting a bill in the General Assembly seeking to mandate pulse ox (blood oxygen level) screening for all babies, which was recently vetoed in Virginia.

To receive more information about joining a local support group, Moretz can be reached at 233-8098. To learn more about CHD, Moretz recommends Mended Little Hearts, a national organization with plenty of information and links to local chapters. To find out more, visit www.mendedlittlehearts.org.