Maddie e Leo, Palo Alto

As a child, Maddie was diagnosed at Lucile Packard Children’s Hospital Stanford with type 1 diabetes. Her experiences at the hospital inspired her to pursue a career in nursing at Stanford Health Care. Maddie and her husband, David, live in Palo Alto, just a short drive from the hospital that has played such a pivotal role in their lives. 

When Maddie became pregnant with their first child, she knew the pregnancy would be high-risk due to her diabetes. Her pregnancy was further complicated when, at her 20-week anatomy scan, doctors discovered a potential issue with the development of their baby’s heart. After a weekend of fear and stress of the potential diagnosis, a fetal echocardiogram confirmed the suspicions and fears: Their son, Leo, had Transposition of the Great Arteries (TGA), a rare and serious congenital heart condition. In TGA, the heart’s two main arteries, the aorta and the pulmonary artery, are switched, causing oxygen-rich and oxygen-poor blood to circulate improperly. 

Maddie and David were reassured by Michelle Kaplinski, MD, Leo’s fetal cardiologist, who explained the high success rates of surgery to correct the heart condition.  However, she also warned them of what this journey would look like; open heart surgery shortly after birth, a lengthy hospital stay, and potential complications, including the possibility of developmental delays. Despite the heavy news, Maddie and David were comforted by the compassion and expertise of the Packard Children’s Hospital care team. 

 “Receiving Leo’s diagnosis was one of the scariest days of my life, but I knew we were in the best hands,” Maddie says. “There was nowhere else I would rather be than Packard Children’s Hospital.  We have been incredibly supported from that day on, both in my health and in Leo’s. Every single nurse, physician, ancillary support staff, housekeeper, and technician has made a positive impact on us.” 

 At 33 weeks, Maddie developed symptoms of preeclampsia and was admitted to the hospital. She hoped this would only be an overnight stay, anxious to return home and rest prior to her scheduled c-section at 37 weeks. However, her condition quickly worsened, and Leo was delivered via C-section at 34 weeks. Due to his prematurity and heart defects, Leo was rushed to the neonatal intensive care unit for stabilization after his birth. Leo stayed in the NICU, longer than anticipated, to allow his lungs and brain to further develop, prior to his heart surgery. 

 When he was 2 weeks old, Leo had surgery, performed by Michael Ma, MD. Maddie recalls how Dr. Ma described Leo’s arteries as being the size of the strings on a mandarin orange. Despite a successful operation, Leo faced additional challenges, including postoperative seizures, cardiac rhythm issues, and a condition called chylothorax, where fluid accumulated in Leo’s chest, all which complicated his recovery and extended his hospitalization. 

Throughout their journey, the family received extraordinary support from their Packard Children’s care team. Child life specialists made footprints as keepsakes, and David participated in an activity with the team to make a photo frame, which now has a special place in Leo’s nursery.  Wanting to learn everything he could about Leo, David asked questions about his anatomy, the treatments he was getting and the devices in Leo’s room, and the staff took the time to explain everything to him, ensuring that he felt engaged in Leo’s care. 

 “Every time I stepped into Packard, I felt at home,” David says. “Every engagement with staff felt personal, that it was more than a job for them. Their efforts to ensure my family and I felt cared for and comfortable were unmatched.” 

After spending four weeks in the Cardiovascular Intensive Care Unit, Leo was finally well enough to go home and meet his two furry siblings, dogs Bowen and Marley.  

 Today, Leo is thriving. He’s a happy baby, busy walking and eating everything he can, and enjoying life with his parents. The family is filled with excitement about their future, especially as they prepare for Maddie and Leo to take on the role of Patient Heroes at Summer Scamper on Saturday, June 21. Their journey has been marked by challenges, but it’s also been a testament to the love, care, and hope that surrounds them.