Jacob's Story: Parent's Letter ProjectTotal aganglionic colon Hirschsprung disease- Jacob’s mom

Jacob was born at 37 weeks with total aganglionic colon Hirschsprung disease leaving him with 10 cm of small intestine, end jejunostomy. Jacob had an ileostomy placed only to find that he never had a stool and a week later had to have another surgery to find ganglion cells. His doctor feared he had the worst kind of Hirschsprungs. We were told by three other physicians that he would never make it to 3 months; 6 months would be amazing, and 1 year would be an absolute miracle. After eight weeks in the Neonatal Intensive Care Unit (NICU) and watching our son become more jaundiced by the day as his liver was going into failure, we were referred to Clarivet Torres, MD, who gave us hope.

Jacob is now five years old and his liver has completely regenerated itself. He has not had an intestinal transplant nor needed one since we met Dr. Torres. He has been a part of the intestinal rehabilitation program at Children's National. He goes to preschool, has friends, wears a backpack, and is the comedian of his class.

We have a road ahead of us but our faith in God is guiding us to the best doctors and the best care. During the first year of Jacob's life we lived every day as if it may be his last. We still are blessed every day by his presence. Thank you, Dr. Torres for your compassion, your dedication, and your concern for my son. Without Dr. Torres' hard work we would not be where we are today. We are forever grateful.


Jacob’s mom, Stephanie

Treatment Team