Jahziah’s story: The road to a mended heart
After years of waiting, Ephah McKenzie gave birth to a beautiful baby girl, Jahziah, eight weeks premature in her home country of Guyana. Jahziah was born with Down syndrome, but mother’s intuition told Ephah that her baby was struggling with something. She took Jahziah to the pediatrician and an x-ray uncovered problems with her heart.
The following months brought a number of frustrating hospital visits and conversations with doctors and hospital officials in Guyana. Exasperated and desperate, Ephah reached out to the local media for help.
That’s when she was referred to World Pediatric Project. When Ephah spoke on the phone with a representative from WPP, “everything got easier.” They made arrangements for Ephah and Jahziah to travel to Richmond so Jahziah could get the cardiothoracic surgery she needed at our Children’s Hospital Foundation Heart Center – and Ephah could finally take a deep breath knowing she had a growing team to support and care for her baby.
Coordinated cardiac care for a surprising diagnosis
Mom, feeling nervous and hopeful, and 9-month-old Jahziah arrived in Richmond on July 1, 2019 and settled into their room at The Doorways.
When our Heart Center team examined Jahziah the next day, they discovered something unexpected – a tumor on her kidney. The heart surgery that Ephah had tirelessly advocated for was postponed for another major surgery in which Dr. David Lanning removed Jahziah’s kidney and tumor. The cardiac surgery team was also able to drain a large amount of fluid that had collected around Jahziah’s heart. Without missing a beat, mom and Jahziah’s team of doctors and nurses worked to get her stable and ready for the operation to fix her heart.
During this time, Dr. Tom Yeh, chief of cardiac surgery, explained to Ephah exactly what was wrong with her baby’s heart. She had a hole between the upper and lower chambers, and a single valve where there were supposed to be two – an atrioventricular septal defect, or AV canal. He also explained how he planned to make it better. On September 10, a little more than two months after arriving in Richmond, Dr. Yeh repaired her heart and Jahziah began her recovery.
As the anesthesia wore off and Jahziah woke up, she began to cry. Her mother comforted her daughter with kisses and whispered with confidence, “It’s okay. Mama’s got you.” Ephah’s prayers had been answered.
Although both surgeons were focused on the end result of fixing Jahziah’s heart, they now had a special place in Ephah’s heart too.
Reflecting on the doctors, she recalled, “Dr. Yeh – he’s amazing! Dr. Lanning – no matter where he was in the hospital he would say, ‘Hello! How’s my baby doing?’”
Thriving and growing with heart surgery in the rear view
Now, nearly a year and a half later, Jahziah is “like most toddlers” according to her mom.
“She adores giving hugs and kisses, receiving compliments, music and musical instruments,” said Ephah.
Her morning routine usually includes sleeping late, mom cleaning her feeding tube and feeding her, then playing and watching her favorite shows. If she sits by herself and sucks her fingers that means she’s hungry and, if you hang around for a bit, you can probably also spy her singing Baby Shark or Elmo’s Brush Your Teeth. She’s learning to count and to identify parts of her body, making it easier for Ephah to figure out if something’s hurting.
“I am beyond thankful. Jahziah was given a second chance at life and neither of us is taking any day for granted,” said Ephah. “Overall I can say Jahziah has become very active and independent. If she sees something she wants, she’s not afraid to take it.”
Go out into the world and find what you want, sweet Jahziah!
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Jahziah at her most recent appointment