Our son Maverick, who is now 5 months old, and our family have had a long and bumpy ride. Just his diagnosis of a rare congenital heart defect alone is scary. Add the COVID-19 pandemic on top of our child’s fragile health makes it even more nerve wracking. Because Maverick has these heart issues, his immunity is weaker than most kids his age. Getting sick is a huge worry for his care team and our family. We were already worried about flu and RSV season, not expecting this new virus and an even longer list of concerns.
Thankfully, Akron Children’s Hospital has been on top of their precautions, giving comfort to Maverick’s family at home as well as myself. I have been at his bedside the whole time besides a few hours here and there switching with my husband because of visitor restrictions at the time, as well as needing a break.
Maverick’s heart journey, while short at only 5 months, is jam-packed. Maverick had his first open-heart surgery at just a week old. He has beat the odds to get here, astounding his care team and showing off his little “rebel” personality. Looking at him, he looks like a healthy and normal baby! But under his scars tell a story of a warrior. Maverick was diagnosed before birth with congenital heart defects, dextro-transposition of the great arteries (D-TGA), double inlet left ventricle (DILV), as well as a ventricular septal defect (VSD). This combination isn’t unheard of but it is rare to see. Thankfully his system works well enough for little Maverick with help from his cardiovascular surgeon Dr. (Robert) Stewart, cardiologist Dr. (Chandrakant) Patel and their teams.
Recently Maverick had his second open-heart surgery for his bidirectional Glenn, where surgeons connect a large vein called the superior vena cava to the pulmonary arteries. This allows this large vein to supply the lungs with blood. While everything heart-wise is doing great, he remains in the hospital for other complications. With heart surgery, these complications are not very common and will take time to solve. Post-surgery he was diagnosed with chylothorax (accumulation of lymphatic fluid in the space surrounding the lung) and is making progress but it’s slowly going. With our focus on his health, we know that our hospital stay is long.
During Maverick’s visit with Dad, I go for walks outside around the campus, eat an uninterrupted meal and sometimes run home to visit Maverick’s siblings. They miss being together with Maverick, but everyone understands the limited amount of visitors drives down the risks of spreading COVID-19 and are more than happy to comply for the health of Maverick, other patients and the staff.
Regardless of the visitor restrictions, Maverick talks to family daily with video chats. He talks to his grandparents and aunts that he has not seen since February, his grandparents in Florida whom he has yet to meet, and, of course, talks to his siblings and Dad anytime he can. Maverick’s sister reads him bedtime stories, and he loves to watch her talk and falls asleep to her words, just like at home. Maverick likes to “tell” his Dad and brother about his care with his adorable baby babble. Dad is able to focus on Maverick and his recovery, not virus concerns, knowing Maverick is safe and sound in the Pediatric Intensive Care Unit (PICU).
Maverick has become a bit well known around the PICU, and it’s not just because of his lengthy stay. Known for his big expressive baby blues, his “rebel” personality, and his love for Harry Potter; doctors and nurses like to pop in from time to time to see his progress as well as keep tabs on his “mischievous” behavior. Maverick, even though he’s a baby, has been very active in his care. He listens to the doctors’ guidance, makes his own remarks and lets it be known when he’s ready for the next step.
Maverick and our family are so relieved to be at Akron Children’s Hospital, a safe place for Maverick to recover. Every measure taken has made the stay that much easier, and we are thankful for the precautions.