Jake was born premature with 23 intestinal blockages unable to even tolerate a teaspoon of milk. During his four months in the NICU, his mother became an integral part of his treatment team.
Because an in utero ultrasound had discovered a blockage in her son’s small intestine, Tracy Z of Port Jefferson was prepared for him to go into surgery immediately after birth. What she wasn’t prepared for, however, was that he would be born so early — at 32 weeks — and that during the surgery doctors would find not just the one blockage, but a total of 23.
Fortunately, baby Jake was at Stony Brook University Medical Center, which has the expertise and experience for handling these kinds of surprises. The pediatric surgical team, led by Richard Scriven, MD, got to work.
They removed 22 of the blockages right away, then implanted a stent into Jake’s small bowel for the tissue to heal around. A month later, they would perform a second surgery to remove the final blockage and reconnect the bowel. During this time, Jake spent four months in Stony Brook’s Neonatal Intensive Care Unit. He could barely eat. “We would feed him a teaspoon of milk,” recalls Tracy. “Even then, he couldn’t keep food down. The NICU team kept trying different techniques until finally he started gaining weight. Now he’s five, and he eats anything and everything.”
What she remembers most from those long days and nights in the NICU was the absolute dedication of the staff. “The nurses really got to know Jake, and the same group would make sure to stay with him. I also appreciated how the team invited me to sit in on their meetings and then took my contributions seriously. I always felt like one of them; that we were equals and that we were on the same page.”
While Jake entered kindergarten in the fall and has mostly caught up to his peers developmentally, the condition that may have caused the blockages still exists. “We believe Jake has Hepatoportal sclerosis, which restricts blood supply to key organs such as the liver,” says Tracy. “He is currently undergoing additional testing to see what the next steps may be. I’ll always be grateful to Dr. Scriven—who checked on Jake every single day - Dr. Anupama Chawla, and the rest of the team at Stony Brook. They were all nothing short of amazing.”