“You never think it is going to happen to you. One day you're sitting in the doctor's office talking about what you're going to make for dinner that night… The next minute the doctor comes in and is telling you that your baby will need open heart surgery after she is born.” This is how Sara Ward describes learning that her pregnancy was no longer routine. “I was only picking up phrases like ‘large hole in the heart’ and ‘surgery.’ The previous days’ frustrations of unexpected car repairs and missing furniture parts seemed so meaningless,” says Sara, a Communications Consultant for SSM Health in St. Louis.
Since previous anatomy scans had not provided a good image of baby Lily’s heart, Dr. Allan Fisher, Medical Director of the St. Louis Fetal Care Institute, attended their next appointment at the Maternal Fetal Care Clinic at SSM Health St. Joseph Hospital - Lake St. Louis to assist with the ultrasound. After a thorough examination, Sara and Tony received the shocking news that Lily had two issues: 1) her heart was positioned incorrectly, and 2) she had Tetralogy of Fallot, which is a series of four congenital heart defects and would require open heart surgery 4-6 months after she was born to repair it.
Following that appointment, the team at the Fetal Care Institute coordinated a meeting for Sara and Tony with the fetal heart team at SSM Health Cardinal Glennon Children’s Hospital. This was a full day of meetings with the Maternal Fetal Care Team, an echocardiogram to view the baby's heart in more detail, and appointments with the pediatric cardiologists and nurse practitioners who would help them navigate the journey ahead of them. Sara refers to their pediatric cardiologist, Dr. Chetana Reddy, as a “rock star.” “She was so patient with our questions and explained everything in ways we could understand it. Even though this is a rare condition, she made it seem ‘normal.’ I walked away from that appointment feeling confident that we could handle these curveballs and that we had the best person guiding us on our heart journey.”
Sara also underwent further testing to rule out any genetic conditions the baby might have; fortunately, genetic tests were normal. Baby Lily’s delivery was planned for SSM Health St. Mary's Hospital - St. Louis to be close to the Level IV Neonatal Intensive Care Unit (NICU) at SSM Health Cardinal Glennon.
A couple of months before Lily was born, Sara and Tony met Cardiothoracic Surgeon, Dr. Andrew Fiore for the first time. “I was having a hard time that morning because the reality set in that this man I had never met was going to be in charge of saving my daughter’s life. When we met Dr. Fiore… he gave us his home number and told us to call him any time, day or night, with questions. Then he hugged me and told me everything was going to be okay. The gift of presence never stopped with each person we met,” Sara said.
At Lily’s 33-week ultrasound, Dr. Fisher found something new on the scan and sent Sara to SSM Health Cardinal Glennon for a fetal MRI, thinking it could be a hernia in the umbilical cord. What the MRI showed, however, was what pediatric surgeon, Dr. Kaveer Chatoorgoon, thought was an extremely rare series of congenital birth defects called Pentalogy of Cantrell. While a child does not need to have all five birth defects to have this condition, the MRI revealed that Lily had three: Tetralogy of Fallot, an omphalocele (a condition that causes internal organs to protrude through a weak area in the abdominal wall), and a congenital diaphragmatic hernia, or CDH, a condition in which abdominal organs push into the chest cavity, hindering proper lung function.
These new developments meant that Lily would now come to the NICU at SSM Health Cardinal Glennon immediately after birth, because she would require surgery to repair the omphalocele and CDH.
Despite their fears and the rollercoaster of emotions, Sara and Tony were grateful for the technology that allowed Lily’s conditions to be caught early, and for the team at the Fetal Care Institute who were ultimately very present for her. “At SSM Health, we talk a lot about the healing power of presence. Those are not just words. I experienced it firsthand with everyone on the Fetal Care team… They were always putting me and Lily first, and it is something I will never forget.”
On September 25, Sara’s water broke at 38 weeks and baby Lily was born at SSM Health St. Mary’s Hospital-St. Louis. Upon her arrival in the NICU at SSM Health Cardinal Glennon, the entire staff was amazed at how Lily was thriving. Many of the anticipated problems were not as serious as expected: the omphalocele was completely skin-covered, meaning surgery could be postponed, and the CDH had not caused any lung damage. Her total stay in the NICU – one week!
Lily’s journey is far from over – she faced some feeding issues, requiring an NG tube, and some breathing challenges caused by fluid build-up around her lungs. She sees a dietician and occupational therapist weekly and makes monthly visits to the Heart Center for checkups. Her heart surgery will take place around Valentine’s Day and her CDH repair will happen later this summer or fall.
Sara and Tony are so grateful for the entire team at SSM Health Cardinal Glennon, for experiencing firsthand the healing power of presence through the Fetal Care Institute. “We put our fears and questions in their hands and spoke to our specialists at length for how we were going to conquer each one. It made such a huge difference, and really empowered us as parents for what lies ahead”, says Sara.