It was the longest drive of Kelly Smith’s life: four hours in an ambulance from Syracuse, N.Y., to The Mount Sinai Hospital beside her 9-day-old daughter, Matilda, who was critically ill. Seemingly healthy on the day she was born in early September, Matilda had become lethargic and sick after nursing only a few days later. Tests in Syracuse revealed acute neonatal liver failure—a rare, life-threatening condition. Matilda’s best hope was a liver transplant.
“These are the most challenging cases that we see,” says Ronen Arnon, MD, MHA, Director of Pediatric Liver Disease and Transplantation at The Mount Sinai Medical Center’s Recanati/Miller Transplantation Institute (RMTI). “They are extremely high-risk conditions that are associated with very high mortality rates, both with and without transplantation. Many infants never even get the opportunity to be considered for transplant because they are not seen at centers that can provide this service to this age group.”
Last fall, Matilda was the RMTI’s second high-risk neonatal liver transplantation case, and the third in just more than a year, reflecting the institute’s growing reputation as a leader in this emerging field. At the time, lying in a crib just across from Matilda in the Pediatric Intensive Care Unit was baby Alina Naqvi, born prematurely to parents Ali Naqvi and Sumera Adnan.
Following her birth in July, Alina struggled to gain weight. When she became jaundiced, her local doctors on Long Island thought she had a gastrointestinal condition. But by August, after failing to respond to treatment, her endocrinologist referred her to Mount Sinai, where she was evaluated and quickly placed on the pediatric liver waiting list.
Alina weighed just two pounds when a match was found in October. Within days, Matilda was also matched and transplanted. Today, five months after their transplantations, both infants are home, happy, and doing well.
Matilda and Alina joined Ariz Gadit, who received a transplant in 2011, as the RMTI’s tiniest liver patients. Baby Ariz was transplanted three weeks after being born with acute liver failure. Now, one-and-a-half-years later, he is a happy and rambunctious toddler. RMTI physicians will monitor the children throughout their lives.
“It is always important for those of us who work in transplant to try to make something good come out of tragedy and to save lives,” says Sander Florman, MD, Director of the Recanati/Miller Transplantation Institute. He points out that each of the donated livers for RMTI’s tiny patients came from a deceased infant. “We forget that for the families of the deceased donors, transplant helps them heal as they recognize the others whose lives are saved.”
This article was first published in Inside Mount Sinai.