During her pregnancy with now 11-year-old Lorenzo, Milissa was monitored closely with regular fetal echocardiograms. Her oldest daughter, Karina, had been born with hypoplastic left heart syndrome (HLHS), and all of Milissa’s subsequent pregnancies were considered high-risk. When, at 14 weeks gestation, an ultrasound showed an abnormality in Lorenzo’s heart, Milissa’s care was transferred to the Fetal Heart Program at Children’s Hospital of Philadelphia (CHOP) – the same team that had cared for Karina. 

“We had already experienced cardiac care,” says Milissa. “We knew what life would be like.” At 20 weeks’ gestation, Lorenzo was diagnosed with Ebstein’s anomaly, which usually requires treatment immediately after birth. “We asked the team to do everything they could to save our son,” says Milissa.

For the next 10 weeks, Milissa traveled to CHOP for advanced fetal imaging, but at 30 weeks’ gestation, Lorenzo’s heart began to fail, and the team knew it was time for him to be delivered.

Lorenzo was born via C-section in the Center for Fetal Diagnosis and Treatment’s Garbose Family Special Delivery Unit, the world’s first birthing facility for healthy mothers carrying babies with birth defects. 

“I have never seen a team work so efficiently against the clock,” remembers Milissa. In a full-circle moment, Millissa recognized a Cardiac Intensive Care Unit (CICU) nurse who had cared for Karina shortly after birth. “I was so scared, but when she hugged me, it immediately put me at ease. I knew who would be caring for my child and that gave me comfort.”

A fighter from the beginning

The first 48 hours of Lorenzo’s life were “touch and go.” Uncertain if their son would ever leave the hospital, Milissa and Luis began to gather family and friends to say their goodbyes. “We were heartbroken,” she says.

But Lorenzo “has always been a fighter,” and day after day, he held on. Milissa stayed by her son’s bedside the entire time he was in the CICU. “I just couldn’t leave,” she says.

At 3 weeks old, doctors determined that Lorenzo would need a shunt to support blood flow to his lungs until he was strong enough for the first of three procedures that would ultimately reconstruct his heart. This is called staged reconstruction surgery.

Eventually, Lorenzo improved enough that he was moved to the N/IICU where he would stay for the next few months. During that time, Milissa grew close to the nurses who cared for her son. “I didn’t have a big support system,” she says. “That team became my family. Their impact will stay with me forever.”

Lorenzo finally underwent surgery at 4 months old. Within a week, he began to recover. And when his breathing tube was finally removed, Milissa and Luis saw their baby’s whole face for the first time. At 8 months old, Lorenzo was discharged home wearing a CHOP shirt that matched his parents’. “There wasn’t a person in that room that wasn’t crying,” says Milissa.

Support beyond surgery

Lorenzo’s second surgery went just as smoothly, and he was discharged home shortly after. As he approached his first birthday, however, it became difficult to gauge whether Lorenzo was meeting his developmental milestones. “Between prematurity and our lengthy hospital stay, it was hard to know where he was developmentally,” says Milissa.

Many children with complex congenital heart disease (CHD) like Lorenzo may face neurodevelopmental issues, such as problems with behavior, social skills, feeding, motor skills, academics and language development. CHOP’s Cardiac Kids Developmental Follow-up Program provides screening and evaluation for children at risk of developmental issues after cardiac surgery. Addressing these problems early gives children the best chance of reaching their fullest potential.

Lorenzo was evaluated by Lyla El-Messidi Hampton, PhD, ABPP-CN, a pediatric neuropsychologist and Co-Director of the Cardiac Kids Developmental Follow-up Program. He soon began to receive Early Intervention services, including physical, occupational and speech therapies. 

“We began to get an idea of how delayed he was,” says Milissa, who remembers traveling to CHOP twice a week for physical therapy for almost two years. “I feel like the developmental progress Lorenzo has made is the direct result of the care he received early on.”

The full spectrum of ‘top-tier’ care

At 5 years old, Lorenzo underwent his third – and final – cardiac surgery. Recovery proved difficult, and the family spent months at CHOP. When he was finally discharged, “it was incredible to see how healthy he looked,” says Milissa. 

Throughout this time, Lorenzo continued to be supported by the Cardiac Kids Developmental Follow-up Program. In addition to regular pediatrician visits, Lorenzo was closely monitored by Alisa A. Burnham, MD, the program’s Co-Director. 

“It was great having Dr. Burnham’s input and recommendations,” says Milissa. “She guided us into therapies, and her reports helped reinforce Lorenzo’s needs to get him the right services at school. The work they do is incredible; I am forever grateful.”

Lorenzo was eventually diagnosed with autism, and his care was transferred to CHOP’s Division of Developmental and Behavioral Pediatrics, where he sees Kate E. Wallis, MD, MPH, a developmental and behavioral pediatrician. 

Due to his medical complexity, Lorenzo is followed by specialists across CHOP, but from a cardiac standpoint, continues to remain stable. 

Says Milissa, “I am so loyal to CHOP because throughout every experience we’ve had, I knew my child was receiving top-tier care, all the way from the attendings to the environmental services team.” Recently, the family even chose to move closer to CHOP to have easier access to Lorenzo’s continued care. “We don’t take this resource for granted,” says Milissa.

Now 11, Lorenzo is quiet and affectionate. He has a “special light” and loves to giggle. “Life knew what it was doing when it gave us Lorenzo,” says Milissa. “He has changed us in so many ways.”