When Sarah was 26 weeks pregnant, she and husband, Jeremy learned that their unborn baby had a congenital heart defect: Tetralogy of Fallot with Pulmonary Atresia. A great deal of research led Sarah and Jeremy to SSM Health Cardinal Glennon Children’s Hospital and to SLUCare cardiothoracic surgeon, Dr. Charles Huddleston. Coincidentally, Jeremy was followed at SSM Health Cardinal Glennon as a child for cystic fibrosis, so it was a huge comfort to them that Dr. Huddleston was part of a hospital and mission they trusted.
Lillian was born on May 31, 2017. Two days later, she was transferred to the Level IV Neonatal Intensive Care Unit at SSM Health Cardinal Glennon. When Lillian was six days old, she had her first heart surgery with Dr. Huddleston. After a few scary moments following her surgery – Lillian went into cardiac arrest twice in the PICU - she battled and recovered, and went home for the first time on June 17.
Approximately two months after her surgery, a CT scan revealed Lillian had an infection growing towards her heart. SLUCare cardiothoracic surgeon, Dr. Andrew Fiore, performed surgery to clean out the infected tissue and place a wound vac device to help speed healing. In the subsequent weeks during her recovery, Lillian’s heart stopped again. The PICU team placed her on Extracorporeal Membrane Oxygenation (ECMO), a treatment that uses a pump to circulate oxygenated blood back into the bloodstream. In an effort to help Lillian come off the ECMO, Dr. Huddleston and Dr. Fiore took her to surgery to place a new shunt. By later that evening the new shunt was in place and working, and Lillian successfully came off ECMO. Lillian’s recovery was complicated by several episodes of seizures, but after a 30-day hospital stay, Lillian was finally able to go home – a day Sarah and Jeremy prayed for but were terrified would never happen.
On December 27, 2017, Lillian had her full repair surgery. The eight-hour surgery placed a conduit made of donor tissue and repaired the two holes in her heart.
Lillian is now 19 months old and thriving. She just started to walk and is slowly starting to say some words. She gets occupational therapy once a week and has a nutritionist working with her to help her gain weight. Her pulmonary artery continues to narrow so she is closely monitored. Her next heart surgery will likely take place within the next 1 – 4 years. Sarah sums up her feelings today by saying, “Although we can’t really fathom going through another heart surgery again, we know that it will be okay since she has Dr. Huddleston and all of Cardinal Glennon there waiting for her. The impact that the Dallas Heart Center team, Cardiothoracic surgeons, NICU, PICU, and TCU teams have had on us is indescribable. We have made Cardinal Glennon our home away from home for the past year and a half and truthfully owe everything to them. Lillian is still here and reaching milestones and I truly don’t believe that would have been possible without the skilled hands, care, and love Lillian received from Cardinal Glennon.”