As I changed Elise's diaper this morning, I immediately suspected that something was very wrong. Her stool was very dark, almost black, and tarry. Of course, I've heard many times that GI bleeds can present like this, so I was very concerned, since Elise's diagnosis of Biliary Atresia with portal hypertension places her at high risk of having a GI bleed. Anyway, I called the transplant coordinator, who asked me to bring her in to TCH to have the stool tested and run labs. Later this afternoon, I got a call with the news that Elise's hemocult (stool test) was positive for blood, meaning there has likely been a GI bleed. In regards to her labs, her liver panel is still of course abnormal, but her platelets, hemoglobin, and clotting times are still within normal range, meaning she remains medically stable despite the bleed.
So at this point, the team's plan is for me to monitor her closely overnight at home and bring her back to TCH tomorrow morning so that she can undergo more tests in an attempt to determine the source of the bleed as well as whether or not it continues. However, if she should vomit blood at any point tonight or have another bloody stool, I will be bringing her back to the hospital tonight.
Also, I'd like to mention that today, February 28, is National Rare Disease Awareness Day. Elise's liver disease, Biliary Atresia, is a rare pediatric liver disease affecting 1 in approximately 15,000 newborn infants. It is not hereditary or contagious, and its cause is not known. In babies with BA, bile flow from the liver to gallbladder is blocked, which leads to liver damage and cirrhosis. Symptoms in newborns include jaundice, dark urine, enlarged spleen, pale stools, slow or no weight gain. It is so important for everyone to be aware of this disease and the symptoms, because one never knows who this disease, like any rare disease, may affect....and early detection and intervention is essential. Biliary Atresia is fatal if not effectively treated. As in Elise's case, a liver transplant is often needed in patients with Biliary Atresia, and Biliary Atresia is, in fact, the leading cause of liver transplant in children.
