Sarah Wilson, and her husband, Jeremy, dreamed of having another baby. After going through IVF and a miscarriage, they feared that dream may never come true, until they received a positive pregnancy test.
When Sarah was 26 weeks pregnant, they learned that their unborn baby had a congenital heart defect. Upon recommendation from her obstetrician, Sarah and Jeremy sought out a fetal care team and a pediatric cardiologist at another hospital. Baby Lillian’s diagnosis of Tetralogy of Fallot with Pulmonary Atresia was confirmed, which would require surgery as soon as she was born.
“All I could focus on that day were the negatives I was being told,” Sarah said. She remembers hearing, “You won’t be able to hold her. She’ll go straight to the NICU. You won’t be able to feed her.” The rest of Sarah’s pregnancy was filled with fear, worry, multiple doctors’ appointments and a great deal of research. That research led Sarah and Jeremy to SSM Health Cardinal Glennon and to 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. Sarah recalls that she was, “blue all over, and not crying. I was able to see her for only seconds because she went straight to the NICU.” Two days later, Lillian was transferred to the Dana Brown Level IV Neonatal Intensive Care Unit at SSM Health Cardinal Glennon. “Nurse Tricia was the first NICU nurse that we had. She gave me pillow, moved Lillian’s cords and wires, and placed Lillian on my lap. I was finally able to hold my baby for the first time, at 4 days old,” Sarah says.
When Lillian was 6 days old, Lillian went to the operating room for her first heart surgery with Dr. Huddleston. “Walking into the Pediatric Intensive Care Unit room and seeing her sedated, intubated, and hooked to so many tubes and wires, was heart-wrenching,” Sarah recalled. “But Lillian was here and that is what we focused on.” After a few scary moments following her surgery – Lillian went into cardiac arrest twice in the PICU – Lillian began her recovery. She 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. 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 worked for over an hour doing compressions, and finally placed her on Extracorporeal Membrane Oxygenation (ECMO), a treatment that uses a pump to circulate oxygenated blood back into the bloodstream.
“That day, the world was crashing down on me,” Sarah said. “We had no answers as to why Lillian’s heart stopped, and no idea if she would come off the ECMO. It knocked the breath right out of me to see a machine keeping my daughter alive. At one point, I locked myself in the PICU bathroom and just cried on the floor. I learned the power of prayer. I leaned on God and others to pray for Lillian and help to keep her alive.”
In an effort to help Lillian come off the ECMO, doctors Huddleston and Fiore planned another surgery to place a shunt in Lillian’s heart. Sarah remembers Abbie from Child Life coming into her room the day of surgery, having made a beautiful painting of three purple and pink butterflies out of Lillian’s footprints. “When the operating room was ready for her, we kissed her little cheeks, praying it wasn’t for the last time. The staff came in to wheel her away, and we found ourselves in an empty PICU room not sure where to go from there,” said Sarah. By later that evening the new shunt was in place and working, and Lillian successfully came off ECMO. Lillian’s recovery was then 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. Sarah and Jeremy had the pleasure of meeting the donor’s family this past year. Sarah described that meeting as one that “brought so much peace and hope between both of our families. It was an indescribable experience.”
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.”