Sofia Carmela Shores is our 9-year-old daughter. She has a love for family, friends, school and dancing! Sofia is in 4th grade and loves to read, write, and learn about science! She loves playing with her sister, dolls, arts & crafts, has shown an interest in photography and making movies, as well as watching You Tube Kids! She has a bulletin board in her room and loves to change the theme with the months and seasons, and hang pictures of her loved ones. She hopes to become a Pre-School Teacher when she grows up. She is in her fourth year dancing on a competition team – and has exclaimed to her family – I LOVE the STAGE! This year, she accomplished a dream of hers and performed her 1st SOLO at dance competitions. It was something she has been wanting to do for many years, and we felt this was the year for her to try. As her mother, the first time she performed that solo, it was a moment I will never forget.
With this list of activities, you might not realize if you met Sofia today, that she was born with a Congenital Heart Defect. Half way through my pregnancy, Eric and I found out that one side of Sofia’s heart was larger than the other. After a few appointments locally, we decided to seek a second opinion from the Advanced Fetal Care Center at Boston Children's Hospital. They recommended that we deliver Sofia in Boston so that she could start to receive their care from the time of her birth. Sofia was born at Brigham and Women’s Hospital and within a half an hour of her birth she was transported to Boston Children's Hospital's Cardiac ICU. She underwent surgery at 4 days old to repair a coarctation of the aorta (narrowing of her aorta). Sofia was hospitalized for the first 31 days of her life. Her cardiac surgeon, Dr. Frank Pigula and cardiologist, Dr. Lisa Bergerson led her care. There were so many doctors on the team from Fellows at the bedside, to Doctors behind the scenes that we never met - yet they reviewed her case and research and gave their expertise in team meetings. The nurses, child life specialists, respiratory therapists, chaplains, secretarial staff, and custodial staff took care of Sofia and all of our family at her bedside throughout the experience. It was overwhelmingly comforting. We will never forget their faces or their voices of quiet confidence.
At 16 months old, Sofia required a second open-heart surgery for removal of a sub-aortic stenosis (membrane that had grown under her aortic valve). It was a shock to our entire family. Dr. Pigula and Dr. Bergeson led the team for a second time. Familiar faces surrounded us, and they provided the same quality care and support to Sofia and our family. Sofia was inpatient for 10 days and came home just three days before Christmas 2011.
Sofia has yearly appointments with her cardiologist, Dr. Bergeson, who Sofia affectionately calls, Dr. Lisa. Each time we set foot on the campus of Children’s Hospital I feel a flood of emotions. I think back to the fears I had as a new mother, wondering if she would have “normal” life experiences. I feel such gratitude as I walk into the hospital, for all the everyday moments Sofia has had thus far in her life.
Sofia has her most recent appointment with Dr. Lisa just a few days before everything shut down in mid March 2020. At this last apointment the most recent update is that Sofia’s heart remains stable! We are thankful for the thoughtful care that Dr. Lisa provides Sofia and the willingness to stay connected to Sofia and us as her parents throughout the year, as needed. As she has grown, you can imagine that these appointments can be frightening and thought provoking for a child. And that willingess to be available for quesitons as they arise, is truly comforting. We do not know what the future holds, but we do know that Sofia will require continued care throughout her life at Boston Children's Hospital.
Sofia and our family has also received the care from the Cardiac Neurodevelopmental Program seeing Dr. Janice Ware and other team members in recent years. This amazing program is available to all children born with cardiac heart defects, as they are more likely to have difficulties with learning, development and behavior. What we have learned in the last couple years is that what happens in utero to children born with Congenital Heart Defects can impact their development in life. They have been an amazing resource to our family and we are so grateful to have access to this amazing team who continues to work with children and families with research and information to provide to those in need.
We are forever grateful for the care Sofia received during my pregnancy, and when she was an infant/toddler. We continue to be grateful for the care and follow up she receives as a child with congenital heart disease. As a team, this is our 9th year coming together to honor Sofia’s care, and to give back to support children and their families. Please consider joining our team and/or making a donation! We thank you in advance for your support and time.
Special remembrance to my loving mother, Dee Porfilio - She held my hand when Sofia was born, when we found out Sofia would need a second surgery and every day for the 41 days Sofia was hospitalized. Dee who was lovingly called Grammie by Sofia lived her life for her family. Dee is responsisible for our team name, Sweet Cheeks Steppers, which just also happens to be Sofia’s initials, SCS. I kept Dee’s walk shirt from that first year, and just recently gave it to Sofia as a keepsake. Stating perfectly, I walk for LOVE. I believe her love for family has transferred to Sofia and I know they remain forever connected.