It would be hard on the biggest, toughest grownup to go through a gastrointestinal operation. It would be even tougher to follow it up with open-heart surgery months later. Malachi Phoenix Sartor did just that before he was 4 months old, earning his middle name each and every day.
Nichole Sartor found out she was expecting at age 40, meaning her pregnancy was considered high-risk. Because of that, she was referred to see specialists with Regional Obstetric Consultants (ROC), who work with Baptist Health and Wolfson Children’s Hospital to care for these moms-to-be. At 21 weeks along, Sartor learned her little one had Down syndrome and duodenal atresia, which meant his small intestine hadn’t developed properly and didn’t connect to his stomach. At the next appointment, her obstetrician discovered her baby also had a congenital heart defect.
That’s when ROC connected Sartor and her husband, Micah, with pediatric specialists at Wolfson Children’s Hospital.
Asking the tough questions
The Sartors have two daughters: Alivia, 13, and Autymn, 20. But these parents knew raising Malachi would be a totally new journey.
“When I found out about his health conditions, I wondered if he was even going to make it to birth, and if he did, what kind of care will he need afterward?” Nichole Sartor said. “I expressed my fears to my OB and as soon as I did, the Wolfson Children's NICU and cardiology teams agreed to do a roundtable. Their taking the time to have that meeting with us felt really special.”
“I told them all kids have challenges, and just because you know your child will have them because he's been prenatally diagnosed doesn’t mean you can’t handle it,” said pediatric cardiologist Robert English, MD.
Sartor added, “Dr. English was the one who made us feel the most comfortable moving forward. The mental and emotional support was incredible from the beginning.”
Together, Malachi’s family and his new team of doctors created a plan to treat both his GI and heart defects after birth.
A tough beginning
Malachi was born on July 7, 2021, and the very next day, he underwent surgery for his intestinal issue so his body could digest food properly. Sang-Woo Pak, MD, pediatric surgeon at Wolfson Children’s and Nemours Children’s Health, Jacksonville, was in charge of repairing the newborn’s GI tract.
“He was the most amazing surgeon who was so humble, and took every bit of the time we needed to talk to us,” Sartor said.
Once Malachi's intestines were on the mend, he stayed in the neonatal intensive care unit (NICU), where he needed support eating and gaining weight, and was given a nasogastric tube for feedings. After two weeks, he developed signs of heart failure and was admitted to the cardiovascular intensive care unit (CVICU) at Wolfson Children’s. It was time to address the newborn's atrioventricular canal defect — a hole in the wall separating the heart's chambers that can cause the heart to work too hard pumping blood.
On November 11, Victor Morell, MD, pediatric cardiothoracic surgeon with UPMC Children’s Hospital of Pittsburgh, and Michael Shillingford, MD, chief of pediatric cardiothoracic surgery at Wolfson Children’s Hospital and faculty member with UPMC Children’s Hospital of Pittsburgh, surgically repaired the hole in Malachi’s heart. Wolfson Children’s Hospital is a member of the UPMC Children’s Hospital of Pittsburgh’s Heart Institute Network, providing top-ranked, specialized pediatric cardiac care for children in North Florida, South Georgia and beyond.
The little phoenix was able to go home three weeks later, the day before Thanksgiving.
A happy ending for a happy baby
Today, Malachi is a “calm, happy and playful” 6-month-old, according to his mom. He spends his days doing what all babies should: gaining weight and getting cuter. He still visits Wolfson Children’s to see Dr. English and Sunita Ferns, MD, director of the Pediatric and Adult Congenital Electrophysiology Program at Wolfson Children’s Terry Heart Institute, who work together to ensure his heart stays healthy.
“We’re making sure he continues to thrive, that his heart repair is holding up, and that his valves are doing well,” said Dr. English. “There are potential issues kids can face months or years after these surgeries, so we’re monitoring to make sure he doesn’t run into any of those.”
And to help even more children like Malachi, in February 2022, Wolfson Children’s will open the Borowy Family Children’s Critical Care Tower. The facility will house a brand new CVICU and NICU — including rooms with space to sleep two parents who want to stay with their babies.
“It will make a world of difference to have that space for your own mental health, the care of the babies, and the ability to bond with your new baby,” Sartor said.
If you would like to learn more about the Borowy Family Children's Critical Care Tower or contribute to lifesaving care for newborns and children, visit hopestartshere.com.