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Khalieghya Dandie-Evans, 20-Month-Old Liver Recipient (Con't.)
Written by Mom La’Tanya Dandie with Mary Wallace
After three weeks passed, her stool was changing colors, her stomach was getting bigger and the whites of her eyes were greenish yellow. The pediatrician still told me that she was fine. I asked for more blood work, and he did it, but though her numbers were high, he still said she was fine.
A couple of weeks later, Khalieghya got a cold. The pediatrician gave her some pediatric Robitussin. I asked about blood tests, but again, he told me they were not needed.
That night, her temperature rose to 105 degrees. We took her to the emergency room, where she was admitted with pneumonia and kept for four days. One day, my sister, who was studying to be a paramedic and firefighter, asked the nurse to look at her eyes as they were yellow. The nurse implied that it was the lighting in the room and no blood work was done. When she was released, I was just told to bring her back if her temperature went up again.
Life went on like this for another month. At my insistence, she had a cystic-fibrosis test, a sickle-cell-anemia test and more blood tests – none of which her pediatrician thought she needed. Her stool had blood in it and her coloring didn’t get any lighter. One night when several of her diapers had blood in them, I took her to the emergency room at 10 p.m. I couldn’t believe that no one panicked at a four-month-old baby with blood in her stool. I had her dressed in a little white nightgown and she was lying on my shoulder, and when I lifted her up, there was blood everywhere. But after more blood tests, they just sent us home again.
The next day, I was asked to bring Khalieghya in for a scan. We left the hospital at 8:15 p.m., and when we got home, the phone was ringing. The doctor on the phone said he didn’t have time to explain, but we needed to get to the hospital NOW! He insisted we take her to a different hospital this time, one that was across town, and I was so scared, I just did what he said. When we walked in, the admittance paperwork was done, a room was ready and two doctors were there waiting for us. What a change from all of the other doctor’s and hospital visits. These doctors said they believed she had Biliary Atresia, the disease I had seen on the Internet two months before. They explained to me that her bile ducts connecting to her liver were not excreting all of the bile. This is what was causing her coloring and blood in her stools.
I asked if this could be something that just recently happened, but was told that Biliary Atresia starts before birth. I had been so scared and so angry for so long, but now I knew that I also had been right. That was even scarier.
The Biliary Atresia was confirmed, and a Kasai Portoenterostomy was performed the next day. Biliary Atresia does not have a cure, but can sometimes be alleviated by the Kasai procedure, which creates a temporary shunt that connects the bile ducts together. For Khalieghya, it didn’t work. She was given a central line and stabilized. The only thing that could help her now was a liver transplant.