On August 31, 2016 we welcomed our firstborn son, Grant Hugh Edwards. We had all of the first-time parent nerves, but with an extra dose of angst and concern, as we knew our Grant would be born with a bilateral cleft palate and lip. There is comfort in knowing of a challenge your child will face before they are born, yet as a parent you are never fully prepared for how to handle the reality of parenthood combined with your infant’s challenges. When Grant was born, his cleft was something we quickly realized was more severe than we expected, but we knew this was the smile we were meant to love from the moment he was placed in our arms.
From day one, feeding became a challenge that was more than we could have ever imagined. Grant was taken to the NICU because we had so many difficulties while trying different feeding methods after he was born. We spent so many hours working with hospital feeding specialists and different bottles. The feeding specialists were so patient and knew our frustrations as parents wanting to help our precious baby accomplish this seemingly simple task.
Ultimately, Grant needed a gastronomy tube (G-tube) placed in order to come home. Not long after being settled at home, we began the discussion of mapping out Grant’s surgeries with Dr. J. Cart DeBrux, his pediatric plastic surgeon. The road seemed so long for someone so little, but Dr. DeBrux has always been one to explain everything with such ease and in such a comforting way.
Cleft palate and lip procedures must be customized to each child and their needs. Dr. DeBrux gave us confidence in his abilities, and we were comforted knowing our child was in the safest of hands in his care. April 4, 2017, the day of Grant’s lip closure surgery, was a special day for our family. It was the day that we were blessed to have an entirely new smile to fall in love with again. Even more importantly, Grant took a specialty bottle for the first time four hours after his surgery. It was a beautiful moment for our family. I cannot describe pen to paper the way my heart felt on this day except an overwhelming feeling of being blessed.
A few months later, Grant had another surgery to close the gap on his palate. After this surgery, Grant’s G-tube was removed. With help from specialized therapists, Grant had already learned to use specialty cups and to eat very quickly following the lip surgery.
At the present time, Grant, now 3, has undergone 12 procedures, some surgical and some non-surgical. Some have been minor, others have been major. Some were outpatient, some inpatient, but that walk to the operating room is a long and difficult one no matter how old your child is or what the procedure may be.
Our family is extremely grateful for Prisma Health Children’s Hospital–Upstate and the doctors, nurses and staff that have helped us on Grant’s journey. We are grateful that Grant can receive the high-quality care he needs for all of his procedures here in Greenville, where we can have the support of family and friends through each surgery and procedure.
We are grateful for the connectedness of all of Grant’s doctors, because they all are part of Children’s Hospital. Through countless procedures and evaluations by his plastic surgeon, general surgeon, ENT, endocrinologist, ophthalmologist, and pediatrician, they all are aware of changes and new information, and are in communication with one another.
Our journey has had many moments of heartache and many more of happiness. There is no guidebook to parenting, let alone parenting a child with challenges or special needs of any fashion. We extend our deepest thanks to everyone at Children’s Hospital that has had a hand in our son’s care.
This blog was written by Grace Edwards. For more information about Prisma Health Children’s Hospital–Upstate and the services and physicians there, click here.