Our Stories

Touching Stories from members of TLC

Darian Anthony Ramkhalawan

Darian was born prematurely on August 15th, 2001. His weight was 1 lb 8 oz and his length was 12 inches.

Story of Darian- “120 days in NICU”

To North Shore University Hospital, Darian is known as a mystery baby. Darian was born prematurely at 30 weeks gestation with severe digestive problems, elevated Alpha-Fetoprotein (AFP) and Hyperbilirubinemia. He was diagnosed with Necrotizing Enterocolitis (NEC) and Tyrosinemia.

Darian had elevated AFP levels and Hyperbilirubinemia. AFP “is a protein normally produced by the liver and yolk sac of the fetus, where it has an analogous function to albumin”, which increases soon after birth. His AFP was 44,000 (normal:15). Hyperbilirubinemia is a higher than normal level of bilirubin in the blood; this condition is particularly common in newborn infants. Also, Darian had high levels of direct bilirubin.

At 1 month 3 weeks Darian was diagnosed with NEC, an infection associated with inflammation, which causes destruction of the bowel (intestine) or part of the bowel. He was treated with antibiotics for 10 days and was also not fed during this time; and, as a result, he made a full recovery.

At 2 months, 3 weeks, he was found to have elevated levels of tyrosine, an amino acid. There are two causes for tyrosinemia. One is a genetically inherited disorder associated with liver dysfunction and the other is caused by severe liver disease. We were informed that the only cure was a liver transplant, however, liver transplantation is not performed on premature infants, so we were waiting for Darian to die. A sample of his blood was sent to several States and Canada to check for the genetic form of tyrosinemia. Darian was referred to a gastroenterologist, Dr. Sunny Park, because of his digestive problems. Dr. Park presented Darian’s case to physicians at Mt. Sinai Hospital; and they confirmed that Darian did not have the genetic form of tyrosinemia. However his tyrosine level was still high; therefore, it was recommended that a liver biopsy be performed.

At 3 months 2 weeks, he had a bilateral inguinal hernia repair and at the same time a liver biopsy was performed to test for the genetic form of Tyrosinemia and to understand the cause of his AFP elevation. On the same day of the surgery, Darian’s repeat blood test for tyrosinemia was normal.

He was discharged 1 week after surgery. Darian is doing remarkably well on his own. He is the world’s greatest jumping jack. His AFP is now 21. At 10 months (Corrected age 7 months 2 weeks old) Darian holds his bottle and feeds himself, turns on his video himself so he can watch Mozart and Elmo. He is 30 inches tall and 21 lbs.

Special thanks to Neonatology’s: Dr. Regina Spinazzola, Dr. Jerrold Schlessel, Dr. Sharon Buckwald; Residents: Dr. Lauren LaGrega, Dr. Yudy Persaud. Dr.Tara Lefenfeld; Nurses: Gloria, Marie, Beverley, Zee, Claudette, Deborah, Lisa, Sue and Ingrid; GI’s Dr. Park and Dr. Chawla; and Pediatric Metabolism’s Dr. Alfred Slonim.