Kelly Hill couldn’t get to the hospital fast enough.
Her husband, Bradley, was behind the wheel, driving as fast as he could, faster than he should. But it still felt like they were crawling.
Hill had just gotten a phone call telling her that something was wrong with her premature baby boy, Hudson, who was in the NICU at Novant Health Forsyth Medical Center in Winston-Salem. As it happens, she works at the hospital. She knew her baby was in the right place, but that wasn’t much help at the moment.
“I felt it in my soul,” Hill said. “I don’t know what it was, but … I needed to be with him.”
In the hours that followed, she got terrifying news and then had to quickly wrap her head around a surgery that almost seemed impossible.
And it started with a diagnosis so rare that other doctors wondered if it could possibly be right.
Hudson was born six weeks early on July 12, 2021. He went to the NICU at Forsyth Medical Center for respiratory issues, which is typical for preterm infants, but otherwise seemed fine. Hill was discharged from the hospital, visiting Hudson daily, watching him grow, waiting to bring him home.
She and Bradley had long wanted to give their 3-year-old son, Carter, a sibling, but they weren’t sure it would happen. After some pregnancy losses and challenges, they were ecstatic to learn Kelly was pregnant. And while Hudson’s premature birth was unexpected, the Hills had no reason to believe he wouldn’t be home with them soon, completing their family.
And then came the phone call about Hudson. He was about one week old.
Solving a medical mystery – quickly
NICU physician assistant Tiffany Martin was alerted by a NICU nurse that Hudson needed immediate attention. When she arrived at his side, Martin didn’t like his chalky color. She thought, “this was not the baby I’d seen an hour earlier.” And she had a feeling she didn’t have much time to figure out what was wrong.
Every evaluation Martin performed hinted at a heart problem. The most important clue was that she couldn’t find femoral pulses. Those are the pulses for the main artery carrying blood to the lower half of the body. She feared Hudson’s lower extremities weren’t getting any blood.
Martin quickly consulted the attending neonatologist and said she wanted to order an echocardiogram (an ultrasound of the heart) and start a medication to help Hudson’s blood flow. The doctor agreed and she did both.
Then she called Hill. And Hudson’s parents raced to the hospital.
Hill would eventually learn there was “good news and bad news.” The good news was that the team had pinpointed the problem, but the bad news was the diagnosis.
Martin told the couple that Hudson had a rare heart defect – an interrupted aortic arch. It's a highly unusual condition in which the aorta didn’t grow correctly, and oxygen-rich blood wasn’t flowing to Hudson’s abdomen and legs.
Hill remembers thinking, “I don’t know what any of this means … it makes no sense.”
But when she heard Hudson would need a “CT surgeon” she started bawling. She was a radiology technologist who worked at Forsyth Medical Center and knew that a cardiothoracic surgeon meant open-heart surgery.
Hill works with patients who’ve undergone open-heart surgery, and she knew it would be a difficult journey for her baby boy.
“I know the pain that they deal with and I just thought, there’s no way you can possibly crack open the chest of a four-pound baby and then work on the heart and the arteries of a baby that has, you know, a heart that’s less than the size of an extra-large grape. I mean, how do you do that? I thought, there was no way. I just knew he was going to die.”
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An unbelievable diagnosis
There would be more news to come. Hudson had a second rare heart defect.
Debbie Tribou was the sonographer who answered Martin’s call for an echocardiogram. She found the interrupted aortic arch, or IAA.
But then she found a second defect known as an AP window. Aortopulmonary window is also rare, and happens when there is a hole between the aorta and pulmonary artery – leading to blood pooling in the lungs. A condition she had never seen in person, only in textbooks.
The National Institutes of Health calls AP window “one of the rarest congenital heart diseases,” occurring in 0.2% to 0.6% of congenital defects. Congenital means a person is born with the condition.
A second sonographer, Rebecca Wyant, confirmed Hudson’s AP window. Rebecca is a pediatric echocardiographer, who had seen this unlikely combination of defects herself once, earlier in her career. She knew what she was looking at, and what it meant for Hudson.
The Novant team decided to transfer Hudson to Duke University Hospital in Durham for surgery, and he would go the next day.
Dr. Catherine Sechrist, a pediatric cardiologist with Novant Health Pediatric Cardiology - Ardmore, is Hudson’s cardiologist. She’d also seen the combination of the two conditions herself once before. So she, like Rebecca, knew what she was looking at when she saw Hudson’s images. But the unlikeliness of these two rare defects occurring together prompted some questions about her diagnoses.
Sechrist said when she called Duke doctors to talk about Hudson, “… they actually didn’t believe me when I told them he had these two defects … So we sent him to Duke and they confirmed both conditions and then reached out later to congratulate us on making the correct call.”
Kelly meanwhile looked at her tiny baby, steeling herself for what was about to come.
“I just wanted to take his place. He just sat there, by himself, in the little bed, and I just felt so terrible. And I thought, I’m never going to see him grow up … it was just really hard.”
The surgery to fix both defects was long, and Hudson’s chest was left open for three days. Sechrist said that’s common when babies undergo extensive or long surgeries.
But the operation was a success, and Hudson left the hospital on Aug. 15, 2021 – more than a month after his birth.
He arrived home with a feeding tube in his nose and was completely tube-fed for months. There were extra precautions around his incision and sternum. He also battled pneumonia and respiratory failure.
There were a lot of appointments that first year, with doctors and with therapists. There was also constant worry, and very little sleep for Hill. Hudson needed to be fed through that tube every three hours.
Through it all, Hill said, he’s “always been the happiest little baby. Now, he’s still happy, with a little bit of attitude.” Which is just fine with Hill.
One more surprise
As it turns out, Hudson Hill’s premature birth may have saved his life.
Hill asked what would have happened if Hudson had been home, not in the NICU at Forsyth Medical Center, when his symptoms started. And she was told he may not have survived the interrupted aortic arch.
Sechrist said if the interrupted aortic arch diagnosis had come after the lack of blood had damaged his organs, it could have complicated Hudson’s recovery from surgery.
“There were the right people in the right place at the right time,” Sechrist said. “All the pieces were in place for people to recognize this early … He was so lucky that he was born early and was in the hospital when this happened. Because otherwise it could have been a very different story.”
‘A normal toddler’
Hudson’s future is wide open. Sechrist said he won’t be restricted from activities or athletics.
“He is incredible. He smiles constantly, he laughs, he is the happiest kid,” she said. “He’s meeting his developmental milestones. His heart looks great, he still has a few things that we’re following him for long-term but nothing that’s limiting him. And he’s allowed to be a normal toddler.”
Hill described the past year as a “wild and emotional rollercoaster” that’s changed her outlook and attitude. While she characterizes herself as independent and emotionally strong, she’s also willing to ask for help when she needs it.
Hill said she finds it easier to speak up, and feels she is now more open-minded and less judgmental. She also said she’s been humbled by this experience.
She’s looking forward to a future with her three “boys” – Hudson, Carter, and Bradley.