A Little Fighter

Published: March 3rd, 2014

Category: Patient Stories

As University of Florida College of Engineering graduates, Jason and Rachel Haeseler knew UF held the promise of talented physicians and cutting-edge treatment. Yet, the couple said they didn’t fully understand this level of world-class healthcare until their newborn daughter was rushed to UF Health Shands Children’s Hospital for lifesaving treatment.

Three years ago, the Haeselers eagerly arrived for a scheduled appointment at North Florida Regional Medical Center to induce labor. Up until then, Rachel and her husband, Jason, experienced a textbook pregnancy with their seemingly healthy baby, Ginny.

However, when Pitocin was administered to start labor, Ginny’s heart rate began to drop. Rachel underwent a cesarean section — and Ginny’s condition worsened. “A couple of minutes after she was born, it was clear that something was not right,” Jason said.

Soon after, they were told their daughter was having difficulty breathing and was being transported to UF Health Shands Children’s Hospital. It was there that Dr. David Burchfield, chief of the division of neonatology, came out into the waiting room to tell Jason that Ginny had been diagnosed with two conditions—transposition of the great arteries or TGA (a congenital heart defect that causes the main arteries – the pulmonary artery and the aorta – to switch positions or “transpose”) and pulmonary hypertension (increased pressure in the pulmonary arteries).

Ginny2With Rachel still at NFRMC, Jason walked into the Neonatal Intensive Care Unit to discover a group of about 20 medical professionals huddled over his newborn daughter discussing treatment options.

“That was when I got a good sense that this was the best we could do for her,” he recalled.

Over the next few weeks, the Haeselers experienced a roller coaster of emotions, with Ginny’s condition stabilizing and then crashing. They spent every day in the NICU, from 7 in the morning until 10 at night. Through the support of their friends bringing meals and the March of Dimes weekly lunches, they were able to remain by Ginny’s side as she grew stronger.

After three weeks on a high-frequency oscillating ventilator, Ginny underwent successful open heart surgery by Dr. Mark Bleiweis, associate professor in the department of surgery and pediatrics and director of the UF Health Congenital Heart Center. Twenty one days after her birth, her parents finally did something they had been dreaming of — they picked up their daughter and held her.

GinnySince then, Ginny, now 3, has struggled with bouts of pneumonia and respiratory syncytial virus (RSV). In November, she was hospitalized for 10 days to receive breathing treatments. Jason and Rachel said it is harder to see their daughter on a ventilator now that she is older and has more of a personality, but they never underestimate her ability to fight through it.

“We know she is a fighter,” Jason said. “And we know that if you really want your kid to have the best chance of survival, you have to get to Shands.”

While Ginny will continue pulmonary follow-ups and has to takes extra precautions against germs, she plays and goes to school just like any kid her age. She is now a big sister to 19-month-old Lillian and will undoubtedly teach her how to be just as strong as she is — and just as strong as her parents have been.

“With the support of everyone in the NICU — from the staff to the families who share their personal experiences — we somehow became at peace with the fact that we’re not on the path we thought we would be, but we’re moving forward on the path we’re on,” Rachel said.

Added Jason: “Through the NICU, we developed long-term friendships—and not just with other families. We try to come over as much as we can to see the staff. We saw Dr. Bleiweis in a restaurant and Ginny ran across to go hug him. She may not know why she is hugging him now, but one day she will.”

UF Health Shands Children’s Hospital celebrated the grand opening of its pediatric cardiac intensive care unit on Jan. 10. From left: David S. Guzick, MD, PhD, UF senior vice president for health affairs and UF Health president; Jason Haeseler; Rachel Haeseler; Ginny Haeseler; Mark Bleiweis, MD, Associate Professor in the Department of Surgery and Pediatrics and Director of the UF Health Congenital Heart Center; Tim Goldfarb, UF Health Shands CEO; and Irene Alexaitis, MSN, RN, NEA-BC, Vice President, Nursing and Patient Services.