Rowan

Condition: Heart SurgeryInterrupted Aortic Arch

Hometown:

Mere days after Rowan Adams came into the world, her parents noticed something was wrong.

“She started to breathe really hard and rapidly; she wouldn’t eat,” said Kristina Adams, Rowan’s mom. “When I was holding her, I noticed she was cold, and when we checked her temperature, it was 94 degrees. It was over the course of three hours she started to decline.”

It was at that point they called their local health provider’s triage line, and were advised to call 911. The emergency call led to a 30-mile ambulance ride from Rowan’s home in Beaver Dam, Kentucky, back to the Owensboro, Kentucky, hospital where she had been born a few days earlier.

“She was fighting to stay alive, basically,” said Kristina, who is a first-time mom. “It caught us by surprise, because the entire pregnancy was super easy, and obviously when she was born, doctors checked her oxygen levels and did a whole bunch of testing to make sure everything was OK, and she passed all those things. The whole situation was terrifying.”

Eventually, after doctors spent hours doing everything they could, she was transported to Norton Children’s Hospital in Louisville, and not a minute too soon.

Getting a diagnosis

“She was very close to dying,” said Natalie S. Henderson, M.D., pediatric critical care medicine specialist with Norton Children’s Critical Care. “Her parents essentially saved her life by getting her into care so quickly.”

Once Rowan was admitted to the Jennifer Lawrence Cardiac Intensive Care Unit, specialists discovered that she had an undiagnosed, rare heart condition called interrupted aortic arch. The aorta is a large blood vessel connected to the heart. It delivers blood to the rest of the body. An interrupted aortic arch means the aorta didn’t form completely, leaving a gap and causing a lack of blood flow in the body. It occurs in about 2 of every 100,000 live births, according to the National Institutes of Health.

“You’re born with something called ductus arteriosus, another blood vessel you have while you’re in your mother’s womb, that directs blood flow. A few days after you are born, that vessel closes. That is fine in a normal heart, but in Rowan’s situation, when that closed it meant the body was getting no blood,” Dr. Henderson said. “That’s why she got so sick. Her kidneys stopped working. Her liver stopped working.”

Rowan was given a medicine that can open the ductus arteriosus back up, allowing blood flow to resume and giving time for her body to heal before having surgery to repair the interrupted arch.

On the mend

“Thankfully, our team was ready to take of her,” Dr. Henderson said. “Our nurses, our [intensive care unit] partners were there. So many people poured themselves into making her better.”

For the first-time parents, seeing Rowan’s turnaround after surgery has been a huge relief.

“It’s amazing,” Kristina said. “She’s done a complete 180.”

Now the family is back home with their happy, healthy 1-month-old baby girl. Both parents are forever grateful for the care Rowan received with Norton Children’s.

“The doctors and nurses were incredible. We so appreciate the level of communication and care provided by hospital staff,” Kristina said. “They take parents’ thoughts and concerns into consideration. It’s really nice, because at Norton Children’s, it feels like you are actually able to advocate for your child the way that you want.”

Dr. Henderson encourages parents to always trust their gut whenever an infant starts to experience unusual symptoms such as lack of appetite or fever and to get their child checked by a health care provider.