Julie and Ian were delighting in the joys of pregnancy when their world changed during a prenatal checkup and they learned their unborn son, Sammy, would be facing two health challenges: Down syndrome and a congenital heart condition. Living in Prescott, frequent trips to Phoenix weren't in their original plans, but the pregnancy now required it. This would be the start of a long journey for Sammy and his family, one filled with challenges, but also with expert medical care and a whole lot of heart.
Diagnoses and early struggles
During a 12-week anatomy scan, Sammy’s heartbeat couldn't be found. Though it was eventually located, further scans revealed Sammy had a thick hygroma, a fluid-filled sac on his neck due to a blockage of the lymphatic system. This was the first indication of Down syndrome as well as possible heart defects.
Julie’s prenatal care was transferred to a high-risk maternal-fetal medicine specialist at St. Joseph’s Hospital and Medical Center. She was also referred to Phoenix Children’s Center for Fetal and Neonatal Care. Julie and Ian connected with Robert Puntel, MD, medical director of inpatient cardiology at Phoenix Children’s and Jessica Felts, manager of fetal care, who answered each one of their questions with kindness and care. It was a moment that shifted Julie and Ian’s perspectives, and for the first time, they felt a sense of hope.
Navigating pregnancy with hope
Despite the initial shock of the diagnoses, Julie and Ian embraced the news and prepared themselves for the challenges ahead. As their due date approached, Julie and Ian made weekly trips to Phoenix Children’s for check-ups, going through many ultrasounds to monitor Sammy.
At each prenatal visit, the couple found themselves surrounded by a supportive network of doctors, nurses, friends and family. Their care team provided them with guidance every step of the way, and Dr. Puntel was a source of reassurance and hope.
“Talking to Dr. Puntel at 32 weeks was one of the happiest days of my life,” Julie said. “He was supportive and said if Sammy comes now, he should make it. It was a big weight off my shoulders. Sammy made it to 39 weeks. He has always been a brave fighter.”
Sammy’s journey after birth
Sammy's birth in May 2023 brought both joy and challenges. Born at Saint Joseph's, he spent his first two weeks in the Neonatal Intensive Care Unit (NICU), where he was cared for by Phoenix Children’s neonatologists. Julie and Ian marveled at their son's resilience, his red hair and his infectious smile.
After his stay in the NICU, Sammy was able to return home for 5 months, getting bigger and stronger before he underwent heart surgery. During this time at home with their son, Julie and Ian navigated the process of feeding him, learning various techniques and understanding Sammy's needs through telehealth visits with Phoenix Children’s. The care team ensured Sammy’s parents were equipped with the necessary knowledge and skills to support their son.
By autumn, Sammy was ready for heart surgery. Roosevelt Bryant, III, MD, surgical director of the mechanical circulatory support/transplant program at Phoenix Children’s performed surgery to repair Sammy’s heart.
A team of supporters
After surgery, Sammy stayed in the Cardiovascular Intensive Care Unit at Phoenix Children’s for two weeks. During his time in the CVICU, Sammy’s older sister, Lucy, who was almost 2 at the time, struggled with her brother being away from home. However, she benefited from child life services at Phoenix Children’s, where she learned strategies to cope with his absence. Lucy was Sammy’s biggest cheerleader; some of her first words were "heart” and “Sammy.”
Yet another big supporter in Sammy’s family has been his dog, Moose. The small white poodle mix provided Sammy with comfort and warmth throughout his journey. Moose stayed close by Sammy’s side whenever he was home, and even slept underneath his crib each night leading up to surgery.
Sammy’s second heart surgery
After Sammy's initial surgery and recovery, his journey still wasn’t over. Three months later, he underwent a second heart surgery to repair a valve in his heart that still needed mending. However, Dr. Bryant once again displayed exceptional skill during this surgery, and Sammy’s care team continued to provide extensive support. Dr. Puntel even went into the operating room to be with Sammy on the day of his surgery.
A true warrior
Though he still requires many outpatient appointments, many via telehealth, Sammy is home and doing very well. Sammy loves being home with his family, especially his beloved sister and dog, and he’s happy to be back to enjoying life with his family. Despite many challenges, he has defied every odd.
“We are glad he’s always been a true warrior and he is a gift to us every day,” Julie said.