Having the Heart to Live: the Story of Survival of a Young Woman and Her Son

Newswise — To look at 21-year-old Carla Sparrow now, it's hard to fathom that not very long ago, doctors worked hard to save her life, several times over. Her smile is bright and optimistic. Her eyes shine as she talks in a soft, lilting voice about her thriving toddler, Blake, who himself had to struggle to survive in the first few weeks of his life, born too soon. "He's such a big boy now," she says. A closer look reveals a vertical scar just peaking above her loose-fitting t-shirt, and her slender arms and legs bear the marks of the devices that kept her alive through heart failure, then later, a heart transplant. Hearing her story makes you realize that the line between life and death can be a fine one. The tenacity and compassion of her doctors and other caregivers was matched only by her own eternal optimism. After all, she had her whole life ahead of her. Right? Early in her pregnancy, Carla's obstetrician noticed Carla's heart made an unusual sound. Instead of a steady, lub-dub, lub-dub, her doctor heard a murmur, a swishing sound that can indicate the heart valves are not functioning as they should. As a precaution, Carla was scheduled for a heart echo at the University of Kentucky Gill Heart Institute. She had one valve that was very leaky and another that was too tight, most likely caused by a childhood bout of rheumatic fever that had been undiagnosed. Rheumatic fever is caused by strep bacteria, which can cause strep throat and develop into scarlet fever and, if untreated, rheumatic fever. Carla saw her doctors at the Gill Heart Institute cardiology clinic every few months until she was 29 weeks pregnant. Carla began having some shortness of breath and her heart was racing, so she went to see her doctors, including Dr. Alison Bailey, at that time chief cardiology fellow at the University of Kentucky, now director of the hospital's newly-established cardiovascular rehabilitation center. Carla was admitted to the Albert B. Chandler Hospital at the University of Kentucky as a precaution. Bailey remembers, "She looked great. I remember both of us joking about how she didn't need to be admitted--we'd just make sure things were fine." Everything changed that night. When she tried to lie down so an ultrasound could be performed to check the baby, fluid pooled in Carla's lungs, making it almost impossible for her to breathe. Doctors had to perform an emergency intubation to insert a tube in her throat, protecting her airway and allowing her body to receive oxygen. Throughout the night and next day her blood pressures were low. Dr. Bailey was inserting a special catheter to measure the pressure in her heart when the baby's heart rate slowed. Dr. Bailey and other physicians and nurses in the Intensive Care Unit watched anxiously as the baby continued to struggle. As the moments ticked by and the baby showed no sign of improvement, Carla's doctors had to make the difficult decision to call for an emergency cesarean section to deliver the baby. Carla was unconscious and unaware that her son was about to be born. Dr. Kristine Lain delivered the fragile infant. "He was so small and barely making noise," recalled Bailey, who stood at Carla's side as the baby was delivered. He was taken immediately to the neonatal intensive care unit at Kentucky Children's Hospital and remained there for many weeks. He weighed just over three pounds. It would be some time before doctors would know whether he would develop normally. "Carla was very unstable in the hours before and after his birth so all of our energy went into pulling her through this while we had Blake in the back of our minds," Bailey said. Carla remained very ill for several days after Blake's birth. She was on a ventilator for several days, requiring help to breathe. However, the young girl began to improve and soon was well enough to go see him and then go home. "We all hoped that Carla's heart would be okay after the pregnancy and the stress that goes with it was over, but she continued to have problems," Bailey said. Eventually Carla underwent open-heart surgery performed by Dr. Chand Ramaiah to replace the two troubled heart valves and part of her aorta. She did very well afterwards for several months, but as her son grew, learning to walk and talk and becoming more active, Carla wasn't able to keep up with him as she hoped. As time passed, she felt worse, and it saddened her to realize she was too tired to sit on the floor and play with Blake. Carla was still being followed at the cardiovascular clinic at the Gill Heart Institute. Her doctors suspected that her heart was just too weak, and she was again admitted to the hospital for heart failure. It was at that time that transplant surgeon Dr. Mark Bonnell first met Carla and discussed the possibility of a heart transplant. "She was hesitant at that point because she was really concerned about caring for Blake and being around for him," Bailey said. "I met Blake at that time too...we had a good time," Bonnell recalled fondly. "I remember entertaining him with the otoscope in the room." While Carla debated a transplant, doctors implanted an automatic implantable cardioverter defibrillator (AICD) to monitor her heart rate. If her heart beat too quickly, too slowly, or stopped, it would deliver a small shock to return the heart to normal rhythm. A few weeks ago, Carla became so sick that she had to be admitted again. "She was in very severe heart failure with only 8-10 percent function and very fluid overloaded," Bonnell said. She was admitted and placed on strong IV medication to help her heart beat a little stronger and placed on a blood pressure monitor connected directly to her heart. "She still desperately wanted to return home to be with Blake--completely understandable for a wonderful young mother of a two-year-old. I told her that I completely understood, having a two-year-old myself, but I feared if she left, she might not be able to make it back to the hospital the next time. She said she would think about it. We then had this same conversation every night for about 4 days," Bonnell said. She decided to stay and move forward with transplantation. About five days later, she had several dangerous arrythmias that triggered her AICD, which saved her life. She required more IV medication and assistance of an intra-aortic balloon pump to help her heart. "We were all very relieved she had decided to stay," said Bonnell. Waiting for a donor, she remained bed-bound for just over three weeks. "The last days before her transplant, she really lost ground and was very fatigued," Bonnell remembered. Her condition worsened, but "the one thing she never lost was her incredible hope and graciousness. I walked out of her room with a lump in my throat for three weeks." Finally, on May 28, the transplant team at the University of Kentucky received good news: through the generosity of another family, a heart had been found for Carla. Ramaiah and Bonnell carefully removed Carla's heart and replaced it with a new one. "The new heart sprang to life," Bonnell said. There was hope. But then, complications arose: Carla' s kidneys shut down for several days after the operation, but again she pushed through, recovering completely. After a couple weeks she was able to walk again, and she was anxious to go home to Blake. "By the time she left, she was whizzing around her rooom packing her things," said Bonnell. Carla was a special patient in many ways. Not only was she an uncommon transplant recipient--only about five percent are in her age range--but, as Dr. Bonnell put it, "her never-ending kindness, humility, and grace through it all endeared her to us all. She did not lose hope and never complained. She brought happiness to all who met her. When she left, I had a lump in my throat again, but for a very different reason. Pure joy." Bailey agreed. "I feel very privileged to have been involved in Carla's care," she said. "She is one of those people in life that really makes you realize what is important and what is not. Carla has had a lot of obstacles to overcome during her short life and it would be so easy for her to be an unhappy person and let all of this bring her down, but that is just not the case. Everyone who meets her just falls in love with her because she is delightful, hopeful, and very upbeat. I will echo Dr. Bonnell's remarks regarding having a lump in my throat on many occasions with Carla, but the last one, watching her leave the hospital, was definitely the best."