That’s when they started talking about transplant
When he was three days old, as we were going to be discharged from the hospital where he was born, the pediatrician came in to do a final exam on him, and she thought that he looked a little jaundiced. She ran bilirubin and that’s when it came back a little abnormal, more than just a normal newborn jaundice…He was sent to the NICU there for two days. They ran a battery of tests and then he was transferred to a hospital that was closer to where we live.

They didn’t really know what it was. He wasn’t really textbook biliary atresia because his bilirubin normalized for a couple of days…he had passed meconium and usually biliary babies don’t do that. So they didn’t know, they didn’t really tell us too much; it was more like, “We don’t know, we’re trying to find out. They did a HIDA scan, and they didn’t really tell us it was biliary atresia; they told us that was a possibility, and then what that meant as far as treatment, and that’s when they started talking about transplant and the Kasai procedure.

Mother of Noah, 5

 

Worst case scenario
We first realized Hannah had liver problems when her daycare provider noticed a big lump in her belly while changing her diaper, so we went to the pediatrician. It really was a quick diagnosis, he pretty much laid out one of three options: one was best case scenario, it was constipation; another one was a hernia, and then the third one, as he described it, could be something “really bad.” So we quickly went right to the ER. Within a matter of three or four days we had the diagnosis of hepatoblastoma.

My initial reaction was one of, “How can this happen? Why is this happening? How did we not notice and her daycare did?” So there was a lot of guilt and just shock. But at the same time, once we got the ultimate diagnosis and knew what the plan was for treatment, knew that we had to be really strong, and honestly I think it was adrenaline that just kept us going day to day. It was really just adrenaline.

Mother of Hannah, 4

 

Crigler-Najjar syndrome
He was born prematurely: he was born at 28 weeks, 1 pound 13, tiny. We spent 68 days in the NICU, and throughout that experience, it was a very troubling diagnosis, because it was so rare nobody really knew what it was. It wasn’t really until about nine or ten months that we actually were able to reach out – you couldn’t Google anything because nobody came up with a diagnosis! People had speculation what it might be, but it wasn’t until nine to ten months that we actually found out what we actually had.

Father of Walter, 11