Behind the Scenes and the why to the Phoenix Connection
Like a phoenix
After two surgeries and 63 days in the NICU, baby Malachi is growing stronger.
It would be hard on the biggest, toughest grownup to go through a gastrointestinal operation. It’d be even tougher to follow it up with open-heart surgery months later, but Malachi Phoenix Sartor did just that before he was four months old, earning his middle name each and every day.
Nichole Sartor found out she was pregnant at age 40, meaning her pregnancy was considered high-risk, so she had frequent ultrasounds to check on her baby’s health. At 21 weeks along, she 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 provider discovered her baby also had a congenital heart defect.
That’s when Regional Obstetric Consultants (ROC) connected Nichole and her husband, Micah, with specialists at Wolfson Children’s Hospital.
Asking the tough questions
Nichole and Micah have two daughters: Alivia, 13, and Autymn, 20. But these parents knew that having Malachi would be a totally new journey.
“When I found out, I wondered if he was even going to live, and if he is born, what kind of care will he need afterwards?” Nichole said. “I expressed my fears to my doctor and as soon as I did, the entire NICU and cardiology team agreed to do a roundtable. Them taking the time to have that meeting with us felt really special, and 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. Board-certified pediatric cardiologist Robert English, MD, FAAP, began seeing Nichole throughout her pregnancy to monitor Malachi’s heart via ultrasound and EKG.
Not an easy start
Malachi was born in July 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, 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,” Nichole said.
Once his intestines were on the mend, Malachi stayed in the neonatal intensive care unit (NICU), where he needed support eating and gaining weight, and was given a nasogastric tube for feedings. The Sartors were able to go home, but after two weeks, their baby boy went into heart failure and was admitted to the cardiovascular intensive care unit (CVICU) at Wolfson Children’s. It was time to address Malachi’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.
Surgeons had wanted to wait until Malachi was 6 months old to do surgery, when the tissues of his heart would be more mature. Michael Shillingford, MD, board-certified pediatric thoracic and cardiac surgeon at Wolfson Children’s Hospital, knew Malachi’s surgery would have the best outcome with two surgeons involved. Victor Morell, MD, board-certified pediatric cardiothoracic surgeon from UPMC Children’s Hospital of Pittsburgh, traveled to Jacksonville to help. Wolfson Children’s partners with UPMC to offer the best in pediatric heart surgery and cardiac critical care. UPMC is ranked #2 in the country for pediatric cardiology and heart surgery by U.S. News & World Report.
On November 11, the pair closed the hole in Malachi’s heart. The little phoenix was able to go home three weeks later, the day before Thanksgiving.
A happy ending (and 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 Hospital, who work together to ensure his heart stays healthy. Nichole is hard at work starting a nonprofit — The Phoenix Connection Foundation — to help with the financial hardships many families face while a child is in the NICU or CVICU.
Wolfson Children’s shares her vision, and will open the Borowy Family Children’s Critical Care Tower in 2022. 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 — to care for patients like Malachi.
“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,” Nichole said.
This is my experience and why I find it in my heart to help eliminate additional burdens on the families; specifically financial hardships. Phoenix Connection, along with you, will be able to connect with these families during their most trying times.
We can make an impact that allows parents to go through this process with added support, compassion and encouragement,
Just imagine what we can achieve together!
Article written by Katie McPherson with Juice