Shakiya’s Road to Transplant

April 7, 2022

It’s nearly impossible to anticipate what life-changing news will feel like until it’s received. For Shakita, it arrived during a routine checkup in 2018, about five months into her pregnancy. Her doctors had some concerns with her fetal echocardiogram, eventually leading to her baby being diagnosed with single ventricle physiology in utero: a heart disease that compromised the proper formation of its chambers and valves, essentially leaving a hole in the center of her heart with complex cardiac anatomy.

While diagnoses like these often flood families with questions and uncertainty, Shakita was quickly referred to Lurie Children’s Fetal Cardiology team and remained optimistic about her baby’s future while getting the best proactive care possible. “Once I met with the team at Lurie Children’s, I was happy to hear and learn about their expertise. I felt confident in the care they could give my baby,” she says.

When her daughter, Shakiya, finally arrived in October 2018, a reassuring plan from the team to address her condition promptly followed. The plan included a series of three heart procedures within Shakiya’s first few years of life, but a full transplant wasn’t expected right away. The first two procedures – at five days and 11 months old – were successful, and all went as planned. Shakita recalls Shakiya was doing well at her one-year mark but leading up to the third procedure, she unexpectedly caught Respiratory Syncytial Virus (RSV), which ultimately changed the trajectory and timeline of her journey.

RSV is a common, contagious virus that causes seasonal epidemics of lower respiratory tract infections, leading to bronchiolitis and pneumonia in infants. It’s a leading cause of hospitalizations in all infants and can be especially worrisome for infants with heart defects to contract. “Any infection in a child with congenital heart disease can put increased stress on a body that is already compensating for a heart that functions inefficiently,” says Anne Gordon, APRN-NP, PNP, Advanced Practice Provider, Cardiology.

Because of the risk, Shakiya was admitted to Lurie Children’s Regenstein Cardiac Care Unit (CCU) in August 2021 for additional support, where doctors learned her heart failure had worsened and her need for a transplant was expedited; she joined the transplant waitlist in September. “They didn’t know it would be that soon,” Shakita recalls. “They thought she would make it to the third surgery, but they didn’t want the RSV to make her sicker. I agreed with them.”

She went on to recover from RSV in the hospital and the wait for a new heart began. Shakita narrowed in on protecting Shakiya both physically and emotionally. “You want your kid to stay as healthy as they can and make sure nothing happens that takes them off the list,” she says. She also stayed adamant about people engaging with Shakiya in a way that felt “normal” and familiar and was especially grateful for CCU nurses Soha Khan, CNA, Mariah Svoboda, RN, and Rachael Barrie, RN for the special care they took with her to keep her spirits high.

After seven months of waiting, Shakita got word of her daughter’s new heart on Friday, March 4, and Michael Mongé, MD, Surgical Director, Heart Failure/Heart Transplant Program; Attending Physician, Cardiovascular-Thoracic Surgery, completed the three-year-old’s transplant the following day. Shakita says the positive changes she noticed in her daughter were immediate and emotional for her, from the physical sounds of her heart improving to the clarity she spoke with saying, “I love you.” “It makes a big difference when they get a heart transplant. She was strong before everything, but she’s very strong now.”

Shakita is excited to now experience her daughter do all the things she loves – dancing, making TikToks, playing with her little sister, and learning numbers, colors, and shapes – with even more joy and energy than before.

Committing to being an organ donor is a generous and life-saving decision that gives thousands of children and adults each year a renewed chance at full and active lives. However, the need for organs and tissue outweighs their availability. Learn more about the gift of organ donation or sign up to be a donor during April, National Donate Life Month.