Faith and Hope Helps Loma Linda Family Heal Their Children

No one would blame Nancy and Carl Coles if they fell into despair.

No one would blame the couple if they caved into heartache, looked to the heavens and asked, “Why?”

How is this possible when their 4-year-old Robert was born with a congenital heart disease? Two years later, son Luke came into the world with a blood clot his near his brain that eventually became an intrusive cyst.

The conditions are life threatening. Yet Nancy smiles broadly.

“You worry,” Nancy said. “But then we don’t want to worry. You just want to enjoy them.”

It’s as if lightning struck twice for the Loma Linda Family, said to Dr. Alexander Zouros, Associate Professor, Loma Linda University Department of Neurosurgery and Pediatrics Chief, Section of Pediatric Neurosurgery, and Neurosurgical Residency Program Director.

“These are two children with completely different diseases the conditions unrelated to each other,” Zouros said. “This isn’t a problem one child had therefore they expected the other would too. This is not a genetic disorder. It almost appears random.”

THE LONG JOURNEY BEGINS

The family could hardly have imagined the turn their lives would take. A former legal secretary, Nancy quit when she became pregnant with Robert.

“I wanted something less stressful,” she said. “So I took a job as a secretary at our church.”

Months later, Robert was born at San Antonio Community Hospital and it quickly became apparent something was wrong.

“He was born with low platelets,” Carl said. “They were going to take him for a stay in intensive care, but the doctor also heard a heart murmur.”

Instead, the infant was airlifted to Loma Linda Medical Center, he said.

He was diagnosed with tricuspid atresia, in layman’s terms, a congenital heart disease, Carl said.  That caused hypoplastic right heart syndrome, a condition where part of the heart is underdeveloped.

It was the start of a string of EKG’s, echocardiograms, and tests and, four months later, emergency surgery.

Nancy did not return to work. Her focus became Robert. At 2, the child had a second heart surgery.

“I was pregnant with Luke by then,” she said.

Robert started to heal and the family prepared for his little brother Luke.

ANOTHER DIFFICULT CHALLENGE

Then lightning struck twice. Luke was also born with low platelets. He was treated. It was not immediately obvious what ailed the infant. But an MRI told the story.

“Luke had a hemorrhage or a bleed in the temporal lobe,” said Zouros who treated Luke. “We don’t really know why it happens. A lot of time you never know why this happens to some babies.

The over brain dissolved the blood clot and it became a pocket of water or a cyst, he said.

“Luke himself has had some minor developmental disabilities,” Zouros said. “He’s a little bit behind when it came to speech and language skills. And he’s had minor issues with seizures and epilepsy.”

As doctors often do, they assessed Luke’s condition.  Dr. Zouros was eventually called in to take over the Luke’s care.

“Cyst was sitting there doing nothing on MRI’s scans,” Zouros recalled

It hardly grew, he said. It was just a very impressive looking cyst taking up space in the child’s brain. “But is it causing a problem,”

But over time, they began to see its’ affects. Luke began to fall behind in speech.

“And he regressed on other skills,” Carl said.

“After a lot of discussion over many months and repeated pictures of his brain we grabbed the bull by the horns and said let’s just drain the cyst to try and take the pressure off,” Zouros said.

LIFE GOES ON

The surgery has been a success, the family said. Luke coos and vocalizes. He babbles a bit. He’s curious and every bit the handful any child should be.

“He says mama but that’s it, Nancy said. “But he’ll calls everybody mama. I’m saying, hey over here.”

Robert is talking and growing just fine. His newfound hobby is to explore the family computer much to his parents dismay.

Both require constant care.

“We’ll be doing more testing,” Nancy said. “I don’t think that will ever stop. I’m always going to the doctors.”

Their lives are constantly shifting and the days rarely feel routine, the couple said. But life marches on.

Faith and love make them strong, Carl said.

“You just put your trust and faith in the doctors,” Carl said.