Trey Heinbuch is a 20-month-old bundle of energy, skillfully sliding down a flight of stairs on his belly, throwing Goldfish crackers from his highchair to the dog and intently watching the Disney Channel.
This is typical activity for a child his age, but Trey’s short life has been far from normal.
At just 11 weeks old, Trey was diagnosed with a congenital heart defect. He spent six days on life support and had life-saving open-heart surgery.
In honor of Congenital Heart Defect Awareness Week, which is Feb. 7-14, Trey’s mother, Randi Heinbuch, is sharing his story to bring awareness to and educate others about congenital heart defects.
Trey was the third child born to Randi and David Heinbuch of Olney, on June 21, 2011. He was the “healthy child.”
In her two previous pregnancies, Randi Heinbuch had preeclampsia, a life-threatening disorder. Her sons, Bryce, 8, and Cole 3, were born prematurely.
“Trey was full-term. I had no preeclampsia, and at 7.5 pounds, he was our heaviest baby,” she said. “Nothing tipped us off that anything was wrong.”
That all changed during a summer day after a trip to the mall. Randi Heinbuch heard Trey making a “horrible grunting noise” as she put him in the car seat. Later, she realized his coloring was off. When she lifted his arm, it was limp.
She and her husband David drove him to MedStar Montgomery Medical Center. She soon was immersed in what she described as a frenzy of doctors and nurses, like a scene out of the television show “ER” that she was watching rather than living.
The physician treating Trey asked her if he had any heart issues, but she was confident that he did not. Since her pregnancy was considered high-risk, she had extensive prenatal testing, and his heart had appeared to develop normally.
He was stabilized and transported to Children’s Hospital, where he was eventually diagnosed with a cold. He improved with breathing treatments. After a few days, he was sent home.
Trey seemed fine until a month later when he had another episode that began with screaming, leaving him pale, limp and struggling to breathe.
Randi Heinbuch took him back to MedStar Montgomery, again grateful to have a hospital so close. This time, after further testing, a cardiologist diagnosed Trey with ALCAPA, or Anomalous Left Coronary Artery off the Pulmonary Artery.
Randi Heinbuch said it is a rare defect, affecting just one in 300,000 babies.
“Basically, this means that the artery that supplies blood to his heart was connected to the wrong place, so his heart was dying off from not getting oxygen,” she said.
She was told he needed to have surgery in order to survive. Trey was again airlifted, this time to Inova Fairfax Hospital.
He had surgery to move the coronary artery from the pulmonary artery and attach it to the aorta. Trey remained hospitalized for a month to make sure his heart recovered. When he arrived, his heart was functioning at 7 percent, and his electrocardiogram looked like that of an elderly man who had suffered a heart attack, Randi Heinbuch said.
When he left the hospital, it was at 30 percent. Normal hearts function at 60-70 percent, she said. She clung to those numbers, because in her mind, they showed he was getting better.
He came home on a feeding tube and had to be weaned off several mediations, which led to withdrawal symptoms.
Although his journey hasn’t been easy, Randi Heinbuch knows it could have been worse. One in every 125 babies is born with a congenital heart defect every year in the United States alone, and they kill twice as may children as childhood cancer, according to the website www.littlehearts.org. Many go undetected until it is too late.
Little Hearts, Inc. is a national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect, according to the website.
Looking back, Randi Heinbuch said some symptoms were there — sweating, which she attributed to hot summer temperatures, cold feet and fast breathing. Other symptoms of congenital heart defects include a heart rate that is too low or too high, lack of energy and unusual skin tone. Some babies with heart defects do not exhibit any symptoms.
She said a simple test given in the hospital might have detected Trey’s problem at birth. Effective Sept. 1, 2012, Maryland became one of a handful of states to enact mandatory pulse oximetry screening for all newborns.
The test, which determines the amount of oxygen in the blood, can be an effective first step in screening infants for congenital heart defects.
Sandra M. Heeley, nurse manager of MedStar Montgomery’s Maternal Newborn Center, said the test involves putting sensors on babies’ palms and feet.
“It’s a non-invasive, simple test that doesn’t take a lot of time and can save a life,” she said. “Since symptoms don’t always show up right away, we don’t want to send a baby home thinking everything is OK.”
Throughout the ordeal, Randi Heinbuch has found comfort through the support group TenderHearts, connecting with other congenital heart defect families online, and by keeping a blog at treyheart.blogspot.com.
She was told Trey’s development would be delayed by about three months. So far, that has proven accurate. He currently receives speech and occupational therapy through the county’s Infant and Toddlers program. He is off all medications, and his prognosis is very good.
“When we first got out of the hospital, I didn’t think my life would ever be normal again,” Randi Heinbuch said. “Just yesterday, I was thinking that my life is back to normal, although it’s a different kind of normal. Even though things are very hectic around here, it’s gotten a lot easier.”