Marrio Norman stroked the dark, wavy hair on his baby’s head, one of the few places on 3-week-old Elijah’s body that isn’t encumbered by a tube or other medical device.
Elijah’s mom, Loni Benau, dreams of holding their “little champ” one day.
But for now the Atlanta, Georgia, couple and Marrio’s mom, Sandra, hover over his incubator at Spectrum Health Helen DeVos Children’s Hospital, hoping and praying God and good fortune continue to smile upon this little boy who has defied all odds.
Born five weeks premature with a severe congenital heart defect that doesn’t allow the heart to pump enough blood to the body because it is underdeveloped, Elijah had been given zero chance of survival by doctors in Atlanta.
When Loni’s doctors discovered fetal heart defects at 20 weeks, she said some encouraged her to terminate the pregnancy.
She and Marrio prayed about the decision. They decided, with God’s help, to stay the course.
Elijah was born via emergency C-section July 13 in Atlanta. He weighed 3 pounds, 15 ounces.
Although he could breathe on his own, heart issues lurked like a silent thief.
Refusing to say goodbye
In early August, Atlanta doctors told the family there was nothing more they could do.
The doctors suggested the family take Elijah home and spend what time he had left on earth—likely two days, or three days max—together as a family.
But Elijah’s grandmother, Sandra, wouldn’t accept that verdict.
She had recently retired from a job as a registered nurse, where she worked with adult cardiac patients. She refused to listen to those doctors.
In the short time she had known her little grandson, she knew him to be a fighter. Strong, like Muhammad Ali. A champion. Not a quitter. Not a dying child. But a survivor.
“I wasn’t hearing that,” Sandra said of the doctors’ prognosis. “I said, ‘No, no.’ I wasn’t accepting that at all. I just believed. We had a strong belief he was going to live and not die.”
Sandra jumped on the internet and researched, looking for cures for hypoplastic left heart syndrome in babies under 4 pounds.
About 3 a.m., the answer appeared.
She read about Mighty Girl Alexandra Mae Van Kirk, a now-3-year-old whom Joseph Vettukattil, MD, pediatric interventional cardiologist, treated at Helen DeVos Children’s Hospital when she weighed less than 2 pounds. Like Elijah, she also suffered from a severe heart problem.
Mighty Girl story begets Mighty Boy
Alexandra is doing great these days.
Sandra immediately knew her grandson could become “Mighty Boy” if given the chance.
“God just put it right in front of my face,” Sandra said as she stood near her grandson’s incubator. “Two articles came up about Mighty Girl and this place. My heart just skipped a beat. I said, ‘Thank you, Lord. Thank you.’”
The next morning, the family called Dr. Vettukattil’s office. He was on vacation, but ended up coming home early so he could assist little Elijah.
Since I’ve been here, I’ve had a calmness come to me. As scared as I was, I felt like God just placed all this support here for us and our little miracle baby.
Marrio, Loni and Sandra had never been to Michigan, but they knew that without making the trip, their little champ would be resting in a casket instead of someday in their arms.
A medically equipped plane picked up Loni and Elijah in Atlanta on Aug. 2. Marrio and his mom flew up Aug. 3.
On Aug. 4, Dr. Vettukattil and pediatric cardiothoracic surgeon Marcus Haw, MD, performed a hybrid procedure.
Dr. Vettukattil performed a catheterization, entering the lung artery directly using a catheter while Dr. Haw cut through Elijah’s sternum and performed surgery on the lung artery branches to restrict the excessive blood flowing into Elijah’s lungs.
Elijah is now recovering in the pediatric intensive care unit. Dr. Vettukattil and other Congenital Heart Center team members visited Elijah and the family Friday morning.
“It’s all good signs,” Dr. Vettukattil told the family in their eighth-floor room. “He’s doing very well. But sometimes, I worry when babies are so small. The worst time is over.”
Shortly after, Dr. Haw stopped in, touched Elijah’s foot and looked at the monitor numbers.
“How’re you guys doing? You OK?” Dr. Haw asked.
He explained that Elijah will likely be weaned from the breathing machine in the next several days.
“A tiny baby like this doesn’t need a lot of strength to be able to breathe easily on his own,” Dr. Haw said. “He’s remarkably stable. We didn’t expect him to be quite so stable.”
Marrio, who calls his son “The Honorable Elijah,” smiled.
“It’s awesome,” he said. “We serve an amazing God.”
Dr. Haw explained parts of the surgery. There were difficult parts. Elijah’s pulmonary arteries were hidden. Dr. Haw had to pass a metal instrument around them, without hitting anything.
A tiny miracle
“When a baby is this small, it’s impossible to do the standard operation,” Dr. Haw said. “Therefore we do something called a hybrid, where the surgeon and the interventional cardiologist work together to stabilize the circulation.
“In a baby of less than 4 pounds, many surgeons would not wish to do that procedure,” he said. “We felt that the baby’s condition was such that he stood a reasonable chance of making a good recovery and therefore we offered the treatment.”
Dr. Haw told the family how each morning at 8 a.m., the team will gather around, discuss what happened in the last 24 hours and make plans for the next 24 hours.
That’s how the family is living these days: day by day.
“For some reason they didn’t want to take a chance and do this in Atlanta,” Marrio said. “Because he was so small, I guess it scared them. But here, they were confident in their ability and their belief in themselves. Dr. Haw, Dr. Vettukattil and the whole team did a marvelous job. Elijah is doing real good but we’re just going to take it one day at a time.”
Dr. Vettukattil said he’s hopeful, but Elijah is still in the proverbial woods.
“This is extremely rare to have this particular combination where the children are extremely small and their heart is so complex,” Dr. Vettukattil said. “This is a last resort when nothing else is possible. It’s a long journey for them. This is not the end of their story.”
If all goes smoothly, Elijah will have a second heart surgery when he’s about 3 months old, and another between the ages of 3 and 5.
“He’ll be high-risk for life,” Dr. Vettukattil said.
Elijah will be able to kick a ball and play, but he won’t be able to play competitive sports. He’ll likely be a candidate for a heart transplant as an adult.
“We had a very good result (with this procedure),” Dr. Vettukattil said. “When babies are so small, it’s so unpredictable.”
But Loni knows her little boy. She’s convinced he’ll pull through this.
“He’s definitely our miracle baby,” she said. “He’s the little fighter. We call him the champ. He’s beaten all odds. I’m so happy we had the surgery and it’s successful. Look at our Mighty Boy over there.”
Everyone was doing just that, looking at the cute little curly-brown-haired boy, who opened his eyes to glance at his mama when she kissed his cheek.
The family said they feel so strengthened by the many who are praying for them and Elijah, those in Georgia and now those in Michigan.
“Since I’ve been here, I’ve had a calmness come to me,” Loni said. “It’s so friendly and the colors are so happy. It’s lit up. It’s not dark. As scared as I was, I felt like God just placed all this support here for us and our little miracle baby.”