It was just after midnight on an unseasonably warm Christmas Eve when Morre and Marcus stepped off the plane at Logan Airport. They carried precious cargo: their newborn daughter Madison needed emergency heart surgery at Boston Children’s Hospital.
Madison was the couple’s first child. Like most expectant parents, Morre and Marcus were overwhelmed with joyous anticipation as the pregnancy progressed. They decorated their baby’s nursery and picked out a name: Madison, which means “gift from God.”
But at Morre’s 20-week ultrasound, the couple’s joy was tempered by some troubling news.
Madison had complex congenital heart disease. The prognosis was not good.
Doctors near the family’s home in North Carolina first thought Madison had a disease called hypoplastic left heart syndrome, or HLHS, which means the left side of the heart is so underdeveloped that it can’t pump enough oxygenated blood throughout the body. After a follow-up appointment with a local pediatric cardiologist; however, Morre and Marcus learned there was more to the story.
While Madison’s heart showed signs of problems, including a hole called a ventricular septal defect, she did not have true HLHS. Still, she would need corrective surgery at around six months of age.
“We were relieved,” says Morre. “We were still afraid that our precious baby girl would need a major surgery, but we were also happy that we were told the survival rate was good.”
Madison was born on Nov. 28, 2015.
After her standard newborn screening, Madison’s medical team suggested further testing. The tests showed Madison needed advanced care, so the team recommended a transfer to a local pediatric hospital where Madison could get the specialized care she needed.
There, Morre and Marcus learned about complication after complication. Madison had supraventricular tachycardia, or SVT, which meant her heart was beating much too fast, and a narrowed aortic arch — the vessel that delivers oxygenated blood out of the heart to the rest of the body could not handle the full amount of blood flow.
“I was sitting in the hospital room, talking with Marcus about getting a second opinion, and one of Maddy’s nurses walked by. She had heard our conversation and brought in the head of cardiology, who then advised us that she had a contact at Boston Children’s Hospital — a specific cardiologist she knew there — [Dr.] Gerry Marx.”
Morre and Marcus made the call, and in no time had made arrangements to fly to Boston with their fragile baby girl. Madison was in the operating room by 8 a.m. on Christmas Eve morning.
Heart surgery and recovery
Madison’s first surgery enlarged her aorta, closed the ventricular septal defect and replaced her mitral valve. She recovered well and appeared ready for discharge when her heart suddenly started to fail again. It was drastic and fast, and she needed a machine called ECMO (Extracorporeal Membrane Oxygenation) to keep her heart and lungs functioning.
Eventually, Madison could survive without the machine, but she needed a repeat surgery.
“Dr. [A.K.] Kaza was our savior,” says Morre. “He promised us he would do whatever he could to save Maddy. He told us, ‘You will take your baby home.’”
“I’m a professional project manager, so I was upfront about wanting to be involved with the care plan every step of the way,” says Morre. “Maddy’s team really let me in and kept me updated on every new development.”
How’s Madison doing now?
“She’s doing great!” Morre reports proudly. “She’s meeting milestones, rolling over, standing and attempting to hold on to things. She waves ‘bye’ and says ‘Momma,’ ‘Dadda,’ ‘hi’ and ‘yes.’”
Back at home, Morre volunteers at Levine hospital as a patient navigator, helping other families going through complicated medical situations. She’s paying it forward and using her experience to educate others.
“I didn’t know how strong I was until I had this little girl,” she says. “Maddy is a modern-day miracle.”
Learn more about the Boston Children’s Congenital Heart Valve Program.