After three heart surgeries, baby Madison spreads smiles, strength and hope

baby-congenital-heart-diseaseIt 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.

congenital-heart-disease-madisonAn unexpected turn

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.”

Maddy’s referral
Morre is eternally grateful to the staff at Levine for knowing when to refer her daughter to another hospital. “They were very honest about the fact that they couldn’t do any more for us, but knew of another place that might help,” she says. “Without that foresight, Maddy wouldn’t be alive today.”

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.

Most children who need ECMO are taken off within a few days or a week at most. Madison was on ECMO for ten days.congenital-heart-disease-Dr.-Marx

Finding strength
Morre credits Marcus for getting her through those long days, weeks and months. “Without Marcus I don’t know what I would’ve done,” she says.
When Madison was on ECMO the first time, Morre couldn’t bear to look at her. “It sounds awful,” she admits, “but she looked so different, all bloated, not like my Maddy at all. Marcus was the one who would go in and check on her.”

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.’”

By the time Madison left Boston Children’s on April 21, she’d had three open-heart surgeries. Her new mitral valve is a Melody valve, which can be expanded as she grows. She also has a pacemaker.

“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.