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Theo’s Story
Site created on May 26, 2021
Theodore 'Theo' James was born on Tuesday May 11th at 2:58 PM at UPMC Magee-Women's Hospital. In the operating room the pediatric team noted that Theo was having trouble breathing comfortably on his own, a common condition for a 37 week male baby. Theo was taken to the neonatal intensive care unit (NICU) at Magee to be monitored until his breathing improved. While in the NICU Theo had a neon-green emesis (vomit) which often can indicate stomach or intestinal issues. An x-ray of his stomach and intestines revealed that part of his small intestines were significantly enlarged due to some type of blockage.
Theo was transferred from Magee to UPMC Children's Hospital around midnight for more specialized care. Through the morning of May 12th Theo underwent three different dye tests where x-ray imaging was used to track the progress of the dye through his small and large intestines. The goal of the dye testing was to determine the exact location of the blockage and what type of treatment would be required. Late in the afternoon the third dye test revealed a dispersion of the dye throughout his abdomen, an indication that the dye from the earlier testing was leaking from one or more holes in his intestinal walls. To prevent any further leakage from his intestines Theo was quickly prepared for surgery.
During the surgery a number of small perforations (tears) of Theo's large intestine were repaired, their cause a combination of the under-developed state of his large intestine and the earlier dye test. The surgery also identified the location of the blockage, a point near the middle of Theo's small intestine where the intestine widened and then suddenly shrunk. To address the blockage Theo received an ileostomy and jejunostomy during the surgery, routing his intestine through the abdominal wall and leaving two stoma exposed on his stomach. The surgeons also took several biopsies of his intestines for testing.
On May 14th the biopsies returned a positive result for Hirschsprung's disease, a condition where a portion of the intestines are not connected to the nervous system. During a fetus's development the nerves begin to develop at the beginning of the small intestine and then slowly grow further down through the large intestine. Without these nerves the lower portions of the intestines cannot contract and expand normally, preventing food and waste from moving through the intestines. Typically Hirschsprung's disease is only seen in the final portions of the large intestine but in Theo's case the Hirschsprung's disease begins much higher in his intestines, a condition called long-segment Hirschsprung's disease.
There is currently not a treatment for Hirschsprung's disease - there is no medicine or procedure to encourage growth of the missing nerves. In a normal case of Hirschsprung's disease the affected portion of the large intestine would be removed and with an adjusted diet the body would adapt to the shorter intestines. For long-segment Hirschsprung's Theo will require closer care, specialized medicine to improve the efficiency of his remaining small intestine, a colostomy bag for his stoma, and receive a portion of his nutrition in a liquid form through an IV.
Theo has underwent several surgeries to adapt his body to best utilize his working intestine. Currently he is at home recovering from his most recent surgery while we await to see if he will require another operation.
