July 3, 2007 was the day our world changed forever. During an unofficial ultrasound at my workplace, we were told that our baby girl’s heart had only 3 chambers. The diagnosis of Hypoplastic Right Heart Syndrome was tentatively made, and would be confirmed by Dr. Hixon, our pediatric cardiologist. At our first cardiology visit at 23 weeks gestation, this blanket diagnosis was replaced by a more specific one — Pulmonary Atresia with an Intact Ventricular Septum. For Eric and me, this was our worst case scenario, but we knew it could be repaired surgically. After much thought and prayer, we decided to travel to Boston for Sarah Kate’s birth so that she could immediately get the care that she would so desperately need. At this time, we were unaware just how serious and rare Sarah Kate’s defect would end up being.
Sarah Kate was born on November 11, 2007 at Brigham and Woman’s Hospital in Boston, MA at 11:45PM. Following her delivery, Eric and I prepared ourselves for her first surgery–the Blalock-Taussig Shunt procedure. Or so we thought… Her first echocardiogram indicated that there was not an opening to her coronary arteries off her aorta. The very next day, following a heart catheterization, we received the news we will never forget. Right Ventricle Dependent Coronary Circulation.
Our options were to take a surgical approach, do nothing, or list for a heart transplant. The doctors at Children’s Hospital Boston informed us that over the last 10 years at CHB, there had been only 3 cases like Sarah Kate’s. Those 3 cases all resulted in poor outcomes following an attempted surgical repair. Eric and I did not like those odds, and doing nothing was never an option.
So, on November 16, 2007, Sarah Kate became the smallest and youngest heart transplant candidate listed at that time. She was placed at the top of the list due to the fact that her fragile life was being sustained by one continuous IV medication. Eric, myself, and Madeline, our 2 year old, stayed in Boston for 2 months. Madeline and Eric returned home to Baton Rouge in January, while I stayed in Boston with Sarah Kate waiting for a heart. On February 7, 2008 at 7:53PM I finally got the call that would change my life and save my daughter’s.
Sarah Kate was given a second chance at life on February 8, 2008 after being on the heart transplant waiting list nearly 90 days. The transplant was a huge success, and Sarah Kate continues to thrive with her new heart. She was released from Children’s Hospital Boston for the first time on February 25, just 3 weeks post-transplant. Sarah Kate finally made her way home to Baton Rouge on March 25, 2008.
Sarah Kate will continue to need cardiac biopsies on a regular basis, as well as an annual cardiac catheterization, to monitor for signs of rejection. She must also take anti-rejection medications for the rest of her life, without them she would die. At the moment, doctors cannot tell us everything regarding Sarah Kate’s prognosis, except that it is promising. We do know that given the current data that Sarah Kate will need another transplant in about 20 years. But, for now we are enjoying the heart she has been given and we thank God every day for allowing Sarah Kate to be here with us. We will be eternally grateful to the donor’s family for making such a difficult decision. Because of their little one, Sarah Kate truly has the heart of an angel.