“Baby Grace came into the world a fighter,” Sherbine Ynnocent shares as she recalls the hours and days after giving birth to her youngest daughter.
Although the family had four children already, they had never had to confront a serious medical scare before. The Ynnocents rushed to the nearest hospital when baby Grace began to show signs of distress mere days after her birth in Key West.
“She had trouble breathing and the doctors told us she was very sick. I had never experienced anything like this, and as you can imagine, it was very difficult to hear,” says Ynnocent.
Grace was transferred to Nicklaus Children’s for what referring doctors believed were complications associated with neonatal sepsis. Soon after the baby’s arrival, however, the care team learned Grace had an enlarged failing heart due to hypoplastic left heart syndrome (HLHS), a complex congenital heart defect that essentially means the baby was born with half a heart.
Dr. Kristine Guleserian, congenital heart surgeon with The Heart Program at Nicklaus Children’s, says Grace was in in the early stages of organ failure and on the verge of a cardiac arrest when she arrived at Nicklaus Children’s.
“Given the severity of her condition, Grace needed to undergo a specialized procedure, known as resuscitative bilateral pulmonary banding, in order to optimize her heart and other organs in preparation for the next phase for her first open heart procedure,” said Dr. Guleserian.
The procedure, which involves careful calibration of restricting bands around her pulmonary arteries so that blood can better flow to all of her organs, is one Dr. Guleserian has pioneered and perfected in her experience with congenital heart surgery and transplantation.
Once her heart was strong enough, Grace underwent the first and then second of what would be three surgeries involved in reconstructing her single ventricle heart, known as the Norwood procedure and the Bidirectional Glenn procedure. A team of highly skilled cardiologists, cardiac intensive care doctors also worked to ensure baby Grace’s heart and organs healed appropriately as she recovered in the hospital’s Cardiac Intensive Care Unit, where she spent close to 10 weeks before finally receiving the green light to go home.
For Ynnocent, being home for the first time with all of her children, including the new baby, was a special moment. “At one point I feared this might not happen, and I am so thankful to God and to all her doctors for making this a reality,” she said.
“Although she has a few hurdles ahead of her with one more planned operation, the Fontan procedure, which will take place when she is between the ages of three and four, baby Grace has already proven that despite all odds she is a fighter,” says Dr. Guleserian. “There is no greater feeling than seeing a family beam with pride while holding their baby after such a rocky start life.”