Patient Spotlight: Sakeenah and Siraj Wadood
Treating the Complex Through a Comprehensive Approach
Sakeenah Wadood was five months pregnant when her obstetrician in Sullivan County, NY told her that her baby boy might only live for a matter of minutes. A prenatal ultrasound had shown that his kidneys were enlarged, and that Sakeenah’s amniotic fluid levels were low. Optimal levels of amniotic fluid are crucial for fetal lung development, and her doctor was concerned that the baby’s lungs would not develop properly and that he wouldn’t be able to breathe on his own. His enlarged kidneys also signaled a serious abnormality in his urinary tract.
Arriving at Columbia
Sakeenah’s doctor referred her to Columbia’s Center for Prenatal Pediatrics, whose team of maternal-fetal medicine specialists are experts in handling high-risk pregnancies. During the remainder of her pregnancy she made the two-hour trek back and forth to Columbia University Irving Medical Center (CUIMC) on a regular basis. Given the severity of his renal disease, and the potential that his lungs would be severely underdeveloped (hypoplastic), “his prognosis seemed to be very grim,” remembers neonatologist Elvira Parravicini, MD.
During one of Sakeenah’s visits, Dr. Parravicini, who directs the Neonatal Comfort Care Program, discussed with her how she might spend the little time she and her son were expected to have together. But the news turned out to be much better. Her son Siraj was able to breathe more easily than expected following his birth at CUIMC/NewYork-Presbyterian Hospital—he needed a very little assistance and there was a good chance he would live. “At birth he was very active,” says Dr. Parravicini. “He had a good cry and demonstrated that he was strong enough to survive—and his lungs were actually fine despite almost no amniotic fluid!”
Siraj was moved to the neonatal intensive care unit (NICU) where Dr. Parravicini remained his primary neonatologist throughout his NICU stay. Siraj required continuous positive airway pressure (CPAP), a noninvasive form of respiratory support, to assist and stabilize his breathing for just a few days. Pediatric nephrologist Namrata Jain, MD quickly formulated a plan to relieve the swelling and pressure in his kidneys. When Siraj was just three days old Dr. Jain's colleagues in interventional radiology inserted tubes into his kidneys to drain the excess urine, and removed the cause of the swelling, a lower urinary tract obstruction (LUTO) of the posterior urethral valve.
Siraj spent the next five months in the NICU, undergoing dialysis and other procedures until he was stabilized and ready to go home. His kidneys were unable to perform their crucial function, so he continued on dialysis and was put on the waiting list for a kidney transplant. When he was just 21 months old Dr. Jain was alerted that a kidney was available, and Siraj and his family immediately made the journey to Columbia, where the pediatric transplant surgery team guided by Dr. Rodrigo Sandoval successfully gave him a new kidney.
Mayor of his Classroom
Before his surgery Siraj did not walk, talk, or eat very much, but over the past few years he has made remarkable strides, Dr. Jain says, and he’s now a happy and healthy five-year-old enjoying kindergarten. He still has a feeding tube, but he’s eating more and more on his own, and his mother says that he’s the proud “mayor” of his classroom. “The doctors and nurses at Columbia cared so much. They were never too busy to help,” she says. She stays in touch with his care team, and continues to send Drs. Parravicini and Jain photos of Siraj. “She’s very grateful to our team because we did not give up on him at birth,” Dr. Parravicini says.
Inspired by the care she and her son received and the skills she learned as his caretaker, Siraj’s mom applied to nursing school, and is now more than a year into her studies. She also counsels other parents of children who need transplantation, helping them through this difficult but life-saving procedure.