Norman might just be 1 in a million

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Sam and Amy Brattain know that people around the country are praying for their little boy. They might not know all of their names, but they feel their love.

While some are friends and family in far-away places, there are scores of strangers who have heard about little Norman Brattain and his rocky start in life.

“Norman, you’ve already touched so many lives, and you’re just a baby,” Amy tells her little boy, who cannot hear her over the beeps and hums of machinery in his hospital room.

Norman is just 2½ months old and has spent all of his days and nights in the cardiovascular intensive care unit at Riley Hospital for Children after being transferred from another Indianapolis-area hospital within hours of his birth.

It was only after he was born that doctors discovered something was wrong. Amy remembers hearing her little guy cry after delivery and getting to hold him for a few minutes. Then Sam held him, but Norman was quickly whisked away, and they didn’t see him for hours.

Ultimately, he was LifeLined to Riley, arriving 10 hours after he was born, and diagnosed with D-transposition of the great arteries (TGA). With this condition, the heart’s main arteries are switched in position, resulting in abnormal blood flow and circulation. It is a serious heart defect that occurs in about 1 in 4,000 babies each year.

But there was more, reports Riley cardiologist Dr. John Parent.

The most important factor in determining the complexity of D-transposition is how the coronary arteries, the small arteries that supply blood to the heart muscle itself, are arranged, he explained.

These tiny arteries (between the width of a piece of angel hair pasta and regular spaghetti) have to be surgically moved during the arterial switch operation to allow them to come off the high pressure/“red blood” side of the heart.

“Norman had a very rare variation in how his coronary arteries originated that occurs in less than 1% of patients with D-transposition,” Dr. Parent said. “Norman had what is called a double barrel/single origin coronary, where the coronary arteries arise directly next to each other with no space between, which complicates the surgery.”

And the baby also had what is called an intramural course, where the coronary arteries ran within the wall of the aorta, instead of coming directly out of the aorta, which complicated surgery even further.

“So, when you combine Norman's D-transposition with the rare coronary variation, we would estimate this occurs in about 1 in 500,000 to 1 in 1 million babies,” Dr. Parent said.

Drs. Mark Rodefeld and Mark Turrentine operated on Norman to repair the TGA, but he has had a rocky recovery, requiring lifesaving ECMO (extracorporeal membrane oxygenation) for two weeks.

Norman now has a Berlin heart, a device that mechanically supports the hearts of patients with heart failure. He is not yet listed for transplant due to other health complications.

“This has been hard,” Amy whispered as she surveyed the countless wires and machines attached to her tiny boy, and nurses Erin Savoree and Jacqueline Frazier check on him. “We are so grateful that he’s alive and amazed at what the hospital has been able to do, what the surgeons have done already.”

But because Norman is intubated, she cannot hear him cry. She cannot see his smile because of the tubes and tape on his face. Even holding him is difficult because of all of the wires sprouting from his body.

Still, she maintains an aura of peace and calm, something she attributes to her faith.

“We’ve been finding strength in our faith, and in staying connected with family and friends,” she said. “There is nothing God cannot do.”

She is grateful for the care and concern shown her family, which also includes Norman’s two older siblings, ages 4 and 6. And she and her husband hope to find a way to capture their baby boy’s story as he grows to share it with him someday.

“I want him to know that this is something that occurred, but it is not his identity,” Amy said.

He is, she said, a unique little boy who already loves to push the boundaries of what is expected or predicted in the medical setting.

“He does not follow the general percentages for anything. He’s exceptional in those ways,” she said. “I just figure the odds are in our favor for him to do the unexpected.”

While she takes up her position next to Norman’s bed in the CVICU, Amy said she finds comfort in connecting with other parents on the heart unit and in reading stories about other patients and families.

“It calms my heart to be able to read those – whether it’s a success or the story isn’t finished,” she said.

And she gives grace to everyone going through hard times.

“This is life, and life is hard, and everybody has their hard. I’m not afraid to talk to people about this, I’m not afraid to let others in,” she said.

Just because their family is going through a challenging time doesn’t mean the family down the hall or down the street or across the country isn’t suffering equally under their own set of circumstances.

“Because he’s a child, it adds gravity, and it’s tragic and you want to place blame,” she said. “You don’t want to think it will happen to you.”

But she hopes theirs is a story that can offer comfort to someone else.

And while she would love nothing more than to be home with her son right now, she accepts that she is not in control.

Their son, she said, “will fulfill whatever God’s plan is.”