From very early on, Megg and Ryan Jacks knew that their daughter, Charlotte “Charlie Belle,” would have kidney issues. She was just 12 weeks in utero when doctors discovered via an ultrasound that her bladder wasn’t emptying as it should. After visiting a maternal-fetal medicine specialist, the Jacks prepared themselves for bad news. “We just didn’t know what would be wrong,” Megg said.
Because Charlie Belle didn’t have enough amniotic fluid in the womb, her lungs were underdeveloped. After she was born, she was immediately transferred to Children’s of Alabama and put on an ECMO machine, which did the work for her heart and lungs for four days. It was then the Jacks learned that Charlie Belle’s kidneys would never function and she would need dialysis to stay alive. To make matters worse, Charlie Belle developed a stomach perforation. “She was just 5 days old and she had to go into emergency surgery,” Megg said. “Thankfully though, the surgery worked and the focus could once again be on her lungs and kidneys.”
Charlie Belle was under the care of multiple neonatologists, nurses and surgeons. She has had multiple surgeries, including one to place a catheter in her abdomen, which would allow her parents to do life-saving dialysis at home. During surgery, however, doctors realized Charlie Belle had too much scar tissue because of the stomach perforation. “They told us that they couldn’t try the surgery again for another six months, which would give her little body time to grow and for the scar tissue to go away,” Megg said. “It was obviously disappointing as we were hoping to take her home, but they were so encouraging and caring.”
Through the ups and downs, Charlie Belle’s care team never gave up. “We had to do dialysis 24 hours a day for months for her to get adequate nutrition to heal her surgeries and grow her lungs," said Children’s pediatric nephrologist Dr. David Askenazi. "As she grew, we were able to reduce the number of hours of treatment allowing her to receive treatment all night and be off dialysis during the day." It was a big step in Charlie Belle’s treatment.
The machine used for Charlie Belle’s dialysis treatments, the Aquadex FlexFlow System, was initially designed to remove fluid from blood in adults with heart failure until Dr. Askenazi discovered the machine could be repurposed for neonate dialysis. Historically, dialysis has been used sparingly in NICUs because machines designed for adults can cause severe complications in babies. Because of Dr. Askenazi’s discovery, Children’s is the first pediatric hospital to safely provide dialysis to babies.
“It was great because that allowed her to go to physical therapy and let us play with her and hold her,” Megg said. Over the coming weeks, they reduced the number of treatment hours until she could sustain life being off the machine for 21 hours a day. Megg continued, "Treatments for only three hours a day went very well. She did so well we were able to skip a few days, which finally allowed her to go home.”
After seven months in the hospital, Charlie Belle was discharged home. She still visits Children’s four days a week for hemodialysis with the goal of reducing visits to once a month. With a new catheter in her abdomen, the family hopes this will allow Charlie Belle to receive all treatments at home. Eventually, Charlie Belle will need a kidney transplant, but in the meantime, the Jacks are simply grateful that the doctors and staff at Children’s worked so hard to save her life. “Everyone at Children’s has been amazing,” Megg said. “They have been there for us every step of the way, answering every question we have and taking such amazing care of Charlie Belle. Without them, she wouldn’t be here.”