Born with a rare disorder called inborn errors of metabolism, Dawson spent 41 days in the NICU.

News, Child Health | 3 months ago

Dawson’s Story: From NICU Graduate to Growing Strong

Born with a rare disorder called inborn errors of metabolism, Dawson spent 41 days in the NICU. Despite his bumpy entrance to the world, he hasn’t missed a beat and is living life exactly how a baby should.

First bath. First outfit change. First month of life.

Many of the milestones new parents meet at home, Gracen and Brandon Horn shared with doctors and nurses.

Though the pregnancy had been routine, Dawson’s birth – and the weeks after – were anything but. Born by C-section about a month early, his fight to breathe and feed began instantly. But as his energy and blood sugars dipped, his lactic acid levels soared to almost 20 times the healthy range.

At just 2 days old, Dawson was put on life support and needed the most leading-edge neonatal care available.

Fortunately, Gracen’s Atrium Health Women’s Care provider delivers at an Atrium Health hospital, giving her newborn immediate access to Atrium Health’s Levine Children’s Hospital in Charlotte. In addition to having the region’s most advanced neonatal intensive care unit (NICU), Levine Children’s Hospital is named a Best Children’s Hospital for neonatology by U.S. News & World Report and is the only one in Charlotte with this designation.

“He was very sick when he first arrived at Levine Children’s Hospital – he was in shock. However, he slowly improved over the next couple of days,” says Matthew Saxonhouse, MD, a neonatologist at Atrium Health Levine Children’s.

Dr. Saxonhouse was one of Dawson’s primary physicians in the NICU and has years of experience caring for the tiniest and sickest of patients and their families. “Even though you’re scared and your baby is very sick, we will always work to provide the best care for your baby. We will treat them as if they were our own. That is my promise to every family I take care of,” he says.

Thankfully, Dawson’s condition began to stabilize, but his initial elevated lactic acid levels remained a mystery. According to Dr. Saxonhouse, lactic acid levels as high as Dawson’s can be caused by life-threatening diseases – his team needed to rule everything out. “They checked him from head to toe. They not only checked him once but double- and triple-checked everything. I don’t think we’d be here if it wasn’t for them,” says Brandon.

After a series of tests were negative for heart disease, sepsis and other disorders, Dawson was diagnosed with an inborn error of metabolism. It’s an incredibly rare genetic condition in which the metabolic system fails to properly break down or store carbohydrates, fatty acids and proteins.

“Inborn errors of metabolism are very complex. Though some babies recover quickly with the proper diet and medications, they can be very difficult to treat and, in some cases, even fatal,” explains Dr. Saxonhouse. In addition, because Dawson was born prematurely, he still faced other challenges, like needing a ventilator to help him breathe and an oral gastrostomy tube to help him eat until he could take a bottle or breastfeed.

Despite the uncertainty, the Horns had peace of mind. Gracen had been a patient at Levine Children’s Hospital herself, after an equestrian accident when she was 11, and still remembers the nurse who gave her a stuffed puppy and helped her overcome her fear of needles. “I instantly felt relief knowing the hands my son was in,” she says. “There’s no other hospital I’d trust more.”

Slowly but surely, with the support of his parents and care team, Dawson’s condition began to improve. A week after arriving at the NICU, Dawson was taken off life support. A week after that, he opened his eyes for the first time since birth. Alongside nutritionists, Dawson’s doctors and nurses began introducing small doses of breast milk, as well as proteins and fats, until Dawson no longer needed a tube to feed.  

“We were able to provide him with aggressive, supportive care that kept him alive when he was very sick, and the nursing staff did a great job caring for him,” says Dr. Saxonhouse.

Finally, 41 days after he was born, Dawson Horn was cleared to go home.

Born with a rare disorder called inborn errors of metabolism, Dawson spent 41 days in the NICU.

A new era of firsts

Dawson’s entrance to the world was bumpy, but his welcome home more than made up for it.

Though the Horns were grateful to close this challenging chapter, saying goodbye to Dawson’s care team was bittersweet. “We’d gotten so used to everybody – it was like we were part of their team. It was hard to leave those people,” says Brandon.

Gracen agrees, adding, “They were our voices of reason, shoulders to cry on, smiles when we needed it most. And most importantly, they were our son’s greatest hope.”

Today, 8-month-old Dawson continues follow-up care with multiple Levine Children’s specialists, including his pediatrician, Hattina Osterberg, MD, at Atrium Health Levine Children’s Rock Hill Pediatrics,  but he’s growing, developing and well on the road to recovery. “Dawson’s case was very unique as he was able to recover. He’s demonstrated that some babies can be affected by inborn errors or metabolism, get better and may never be affected again,” says Dr. Saxonhouse.

After the countless firsts they’d experienced in the hospital, the Horns are thrilled to celebrate new milestones – from Dawson’s first night home, to his first smile and tooth, and all the firsts yet to come.

“I’ll never have the words to tell you how thankful we are for the priceless gift you’ve given us,” Gracen says. “Because of Levine Children’s Hospital, we’ll get to see our little love grow up.”