Austin Rakers was diagnosed with a rare, congenital heart defect before he was even born.
His parents, Misty and Alex had a regularly scheduled appointment for an ultrasound with the OB/GYN. The expectant parents were then referred to the Fetal Care Center and Dr. Caroline Lee, director of Fetal Cardiology, confirmed the diagnosis with a fetal echocardiogram.
Baby Austin was diagnosed with double inlet left ventricle.
Educating Austin's Parents
“One of the things that we liked about St. Louis Children's Hospital was all the different doctors from the various specialties that helped us through my pregnancy and delivery,” said Misty. “We met with neonatologists, maternal fetal medicine specialists, our nurse coordinator, and of course, Dr. Lee.”
Austin’s parents came to the Fetal Care Center at least once a month. Dr. Lee monitored the baby’s heart defect as Austin grew, and provided education along the way.
“Dr. Lee and Meg Mohr, our nurse coordinator, helped us prepare. Everyone was very clear about my delivery and the three surgeries Austin would need. Meg was an integral part of making us feel comfortable and helping us through the whole process.”
During one of Misty’s fetal echocardiogram appointments, Meg toured the couple all around the Fetal Care Center. They saw Labor and Delivery, the Newborn ICU and the Cardiac ICU.
Care for Austin: Birth to Preschool
With a delivery room full of specialists, Austin was born at Barnes-Jewish Hospital on July 5, 2011. He weighed 7 lbs. 6 oz. Austin’s grandma and his medical team accompanied the newborn over to the Newborn ICU at St. Louis Children’s Hospital. Soon after, Misty boarded a wheelchair for the quick trip over the link that joins the two hospitals to see her first-born son.
Austin remained in the Newborn ICU for four days and then was moved to the Cardiac ICU before his surgery. With only a single functioning ventricle, Austin required surgery on July 11. During the seven-hour Norwood surgery, Pirooz Eghtesady, MD, PhD, cardiac surgeon and Heart Center co-director, called Austin’s parents with updates every hour from the operating room. Austin’s cardiac team was extremely pleased that a baby in his condition did so well after this exceptionally complex procedure.
Now at home, Austin has home care three days a week for speech and occupational therapy and weekly appointments with his pediatricians. Austin also sees Dr. Lee and Dr. Eghtesady for check-ups. His next surgery, the Glenn procedure, may be scheduled when he is closer to six months. The Fontan procedure, the third stage, will take place around age 3 or 4.
“I put all my trust in these doctors,” added Misty. “They all have a special gift, and made us feel like we were the only family they were focused on.”
For more information, contact The Fetal Care Center at 866.867.3627.