College Place family raises two sons with heart defects

Untreated, their heart defects could have killed them, but for now, the McCulloch boys have ‘fairly’ normal life expectancies.

Greg McCulloch and his son, Caden, 5, play with toy cars at the family's home near College Place. Caden and his older brother, Kyler, were both born with congenital heart defects.

Greg McCulloch and his son, Caden, 5, play with toy cars at the family's home near College Place. Caden and his older brother, Kyler, were both born with congenital heart defects. Photo by Andy Porter.

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WALLA WALLA — The first cardiac specialist to see inside Caden McCulloch’s heart laid out a plan to deal with the unborn child’s multiple medical issues, including congenital heart defect.

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With her son Caden, 5, on her lap, Carey McCulloch talks about the family's experiences dealing with the congenital heart defects both Caden and his older brother, Kyler, 7, were both with.

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“A Day for Hearts” will take place 11 a.m.-12:30 p.m. at the Diana Bergevin Field House, 1629 Evergreen St. For details call Angela Beam at 525-5433 or email angelab@lillieric...

For more on CDH, see the bottom of this story.

“Let’s set a date to terminate,” the California perinatologist told Carey and Greg McCulloch.

Those would be the last words that doctor said to the couple.

A fast forward of five-plus years — emphasis on “fast ”— and Caden rockets around his College Place home, matching the speed of 7-year-old brother Kyler. The boys, try as they might not to talk over one another, are eager to show off their favorite toys and trampoline skills to visitors. Both display a precosity exceeding their years.

“I get a lollipop when you are gone,” Caden confides to his guests, casting the slightest of glances toward the front door.

Despite no apparent family genetics to blame, both McCulloch boys were born with CHD, or congenital heart defect. The umbrella term hovers over 35 different heart issues affecting one in every 125 births, Carey McCulloch said.

Such diagnoses mean problems with the heart’s structure, from its walls to valves to the arteries and veins carrying blood to the heart or body, according to the National Institute of Health. The problems created range in severity from simple and lacking symptoms to life-threatening.

When Kyler was born, the new parents were told their baby had a heart murmur, not terribly uncommon in newborns, she said. A follow up visit with a cardiologist 10 weeks later — too long coming, in hindsight — revealed the tiny child’s pulmonary valve was partially fused shut, a condition called pulmonary valve stenosis.

There were zero signs to alert them — “no blue lips or fingernails,” Carey said.

But untreated, Kyler’s condition would have killed him before he reached his first birthday, the McCullochs would learn.

“It never even occurred to us our baby could have a heart defect,” Carey recalled. “It’s the No. 1 birth defect, but it’s not well known. Couples are so unaware.”

Case in point: despite having one child with CHD, she and her husband didn’t anticipate the issue would raise its head during their second pregnancy.

“My OB urged us to have a fetal echocardiogram,” she said. “We thought, ‘What are the odds of having another one?’ Then we had the mid-pregnancy ultrasound and the technician got real quiet.”

Caden, they discovered, appeared to have many problems, CHD among those.

“Even the shape of his brain was wrong,” his mother said. “We were told he had a chromosomal issue ... that he was probably cognitively impaired and would have significant problems.”

After the perinatal cardiologist talked about aborting the pregnancy, the family decided to go ahead and get an amniocentesis.

“Just for information, to know what to expect and prepare for whatever the issues were,” Carey said. “The amnio came back clear.”

That told the McCullochs their unborn son did not have three of the bigger chromosomal defects, including Down’s syndrome. As Caden continued to develop, his health picture got brighter.

“The (new) cardiologist would tell us he couldn’t explain it, but things were looking better,” his mother said.

Nonetheless, the road ahead would be rough. Tests revealed the unborn child had an abnormally small right lung; his diaphragm had not formed correctly. The official diagnosis that came later would be coarctation of the aorta, a narrowing of the major artery leading out of the heart.

At birth, the infant presented well — breathing well and crying heartily. At 15 days old, however, he needed open heart surgery and other problems followed.

“We were sent home with a very medically-fragile child when Caden was 8 weeks old,” Carey said.

Since then it’s been a journey of ups and downs in the McCulloch household. While Kyler lives with the probability of future valve replacement procedures, Caden deals with rare Noonan syndrome associated with CHD. The disorder makes him short for his age, alters his facial features and causes spine issues.

The youngster also has the equally-rare Scimitar syndrome that sends oxygenated blood to the wrong side of the heart, enlarging the right side of the organ and depriving the body of oxygen. Untreated, the disorder can lead to heart failure.

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Greg McCulloch and his son, Kyler, 7, study photos on Greg's cell phone. Both Kyler and his brother, Caden, 5, were born with congenital heart defects.

For now, the McCulloch brothers are expected to have “fairly” normal life expectancy, their parents say. The McCullochs added they are not planning to add to their family, given the energy required to attend to their sons’ health.

“I can’t imagine having another child with a heart defect,” Carey said.

Yet they are blessed — neither boy ended up with the learning issues many CHD sufferers have, she added.

As Kyler and Caden discuss favorite books, most-loved stuffed animals and who owns what, the boys seem unaware of their health problems. Indeed, sitting in their parent’s laps and snuggling close, their hearts appear just right.


About congenital heart defect

WALLA WALLA — Congenital heart defect, also sometimes called a disorder, flies under the radar in the American health picture, said Angela Beam, Parent to Parent coordinator for Lillie Rice Center.

Her program offers support, education and social opportunities for families of special-needs children, including physical and developmental disabilities. On Sunday, Parent to Parent will host “A Day for Hearts” to raise awareness of the health issue.

Like elsewhere, the birth defect is a serious health issue for a number of families in this pocket of the country. In 2013, about 90 patients from Walla Walla, Columbia and Umatilla counties got treatment at Providence Sacred Heart Children’s Hospital in Spokane, the nearest facility with pediatric cardiac care. Those care requirements are diverse, ranging from yearly checkups to visits with a specialist every three months to surgery, hospital officials said.

Walla Walla is fortunate to have good access to care, said Dr. Joseph Wren of Adventist Health Medical Group. “We have the privilege of cardiologists coming to the Walla Walla Valley twice a month, to Family Medical Center and Walla Walla Clinic.”

Such visits can handle most of the local patient needs, leaving a much smaller subset that must travel for care, he said. Families also travel to Seattle, Portland and beyond for heart care for kids.

Many newborn cardiac abnormalities go undetected, before and at birth, Beam said. “There is some screening, but it’s basic. They do an ultrasound and yep, there are four chambers pumping blood. It doesn’t go deeper. Sometimes the only alert comes with a sudden cardiac death.”

Beam has her own story. Her daughter Sophia, now 7, is a twin. Beam’s higher-risk pregnancy called for eight or so prenatal sonograms, she said. Yet Sophia’s heart defect was hidden until she couldn’t be taken off a ventilator after her birth.

Doctors then discovered the infant’s heart had holes between top and bottom chambers, plus the aorta and pulmonary artery shared a ventricular chamber rather than separate ones.

“Because of her heart defect and her inability to eat, she spent the first few months (in intensive care) at Sacred Heart Medical Center in Spokane. Her open-heart surgery was done when she was 2 months old and weighed only seven pounds,” Beam said. “The surgeon was able to repair all of the defects in one eight-hour surgery.”

For many other sufferers, the issue carries lifelong consequences, including decreased life expectancy, multiple surgeries stretching out for years, medication schedules and replacing pacemakers.

In this country, media and the health industry focuses more on keeping the adult heart ticking than CHD, Beam believes. The families affected by the problem either experience healing through surgery — occasionally no intervention is required — and that’s that, or are tied to a regime of caring for a child’s chronic heart condition. Those parents often lack time and energy to spread the word about congenital heart defects, she said.

It’s time for awareness to increase, Beam added. “This is a major issue for lots of families. Literally at the top of the list.”

Sheila Hagar can be reached at sheilahagar@wwub.com or 526-8322.

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