Hello! Thank you for taking the time to read my story! I'm Jen Shores and my daughter, Sofia Shore is our 13 year old daughter. She has a love of family, friends, dancing, playing percussion in her middle school band and reading. She is in 8th grade and her favorite subjects are ELA and Civics - her newest interest is Hamilton. And dreams of going to Broadway to see the show! She is the member of a competitive dance team practicing technique in jazz, ballet, modern and tap. This year she has taken to the stage again competing with her first solo in tap. You wouldn't know it if you met Sofia today, but she was born with a Congenital Heart Defect. Our team, The Sweet Cheeks Steppers is walking for a 13th consecutive year to honor all that has been done for Sofia since she was born.
For those of you not familiar with our Sofia's story we found out at my 20 week ultrasound that there was a problem with the growth and development of her heart. We went for a second opinion at Boston Children's Hospital within a couple of weeks to see the experts at the Maternal Fetal Care Center - who recommended that Sofia be delivered at a local Boston hospital so that she could receive care soon after her birth. Within 30 minutes of being born, Sofia was a patient of Boston Children's Hospital and in their care at the Cardiac Intensive Care Unit (CICU).
At 4 days old, Sofia underwent her first open heart surgery to repair a coarctation of the aorta (narrowing of the aorta). Surgery was successful, but recovery was slow. She remained inpatient and in their care for 31 days. During that time, Sofia and our entire family were under the tremendous care of her entire medical team which included doctors, nurses, respiratory therapist's child life specialists as well as the chaplain services, custodial staff and secretarial staff. The smiles and kind words as well as enthusiasm, love and care Sofia received during those hard days will stay with me always. We were so thrilled to take Sofia home after his stay to watch her grow, learn and thrive during infancy.
At her 16 month cardiology check up, just a couple of weeks before Christmas, Sofia required a second heart surgery to have scar tissue removed that has formed near her aortic valve which was causing increased pressure in her heart. As a family, this came as such a surprise. Sofia's familiar medical team and the staff of the CICU cared for Sofia and our family for a second time. Her surgery was successfully, but she did have complications with recovery. Her heart rhythms remained irregular and she was connected to an external pacemaker for 7 days. She remained in the hospital for a total of 10 days and was discharged days before Christmas 2011.
As we were able to start summer vacation 2023, and just there days after delivery the Keynote Speech at the Walk for Boston Childrens in 2023, we learned that Sofia would require a third open heart surgery. She has been receiving regular check ups every 6-8 months for the scare tissue that had regrown under her aortic valve. It needed to be removed as it was causing her heart to work harder than necessary. Sofia underwent surgery at the end of July 2023 and had a remarkable recovery! The was home in just 3 days! It was truly amazing to witness and since this surgery, Sofia does have improved endurance and strength as she has returned to her love of dance! As Sofia has matured and grown, our role as parents have changed. As you can imagine, this experience can be overwhelming for a child. There are questions and concerns that Sofia had, and we were so thankful that her incredible team worked to answer all her questions prior to surgery.
Throughout the years that Sofia has received care at Boston Children's Hospital we have been thankful to find programs within the hospital to support our family and especially Sofia with education and wellness. Specifically the Cardiac Neurodevelopmental Team and the Cardiac Fitness Program. These programs and their amazing teams have been a tremendous support to us as parents and Sofia in her journey. We feel so thankful that when questions arise, we feel we have a support network at the hospital that we can call upon.
I walk in special remembrance to my mother, Dee Porfilio, who held my hand when Sofia was born, stayed with us for all 41 days that Sofia was in the hospital, and who named our team, Sweet Cheeks Steppers, which also happens to be Sofia's initials, SCS.