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Khalieghya Dandie-Evans, 20-Month-Old Liver Recipient
Written by Mom La’Tanya Dandie with Mary Wallace
When I was pregnant with Khalieghya, I did everything right, especially having had three children previously. Every doctor's appointment, I was told “you are fine, La'Tanya, the baby is fine”.
I think even then, in my heart, I knew there was something wrong, but since my doctor delivered my first daughter with no problems, I trusted her judgment. I am a small person, but toward the end of the pregnancy, I gained almost 30 pounds, which is very unusual in such a short time. I was unbelievably uncomfortable and ended up going to the emergency room five times in one-and-one-half weeks. Every time, I was sent back home.
On January 30, 2002, I could take no more. I walked right into the labor and delivery unit, and asked if they could check me out. After some testing, they learned I had pre-eclampsia and toxemia, which rarely come at the same time. My baby wasn’t due until April 15; I was only 28 weeks along. I went through specialists, tests, doctors, nurses and everything else you can think of. Days went by while tests were done and the doctors questioned whether or not to deliver the baby early. Suddenly, one of the doctors said the toxemia and pre-eclampsia had filled my chest cavity with fluids, and the baby's sac was leaking amniotic fluid -- she needed to come today. I had been in the hospital for six days, and at that point, I was ready for anything. It was a tough experience, but by the end of the day, little Khalieghya had arrived into the world.
Because she was a preemie, I was told she would need to stay in the Pediatric ICU for a couple of days. When I was finally able to see her, they said she was jaundiced and her bilirubin numbers were up. One of my other children had been jaundiced and it went away, so I wasn't very concerned. The third day was when things started getting scary. Not only was she still jaundiced, but she also was having sleep apnea and changing colors. They said she needed a tracheal tube to help her breathe. She was not at all happy about that, and let them know when four hours later she extubated herself and would not let them put that tube back in!
After she was born, Khalieghya had to sleep in an incubator with oxygen for 12 days. They kept telling me her bilirubin numbers were up, but that most babies are like that and everything should be fine. When she came home, a nurse was scheduled to come out to check on her every other day for a month, which was great. She was still changing colors, but her father is dark so I thought she was just going to have his coloring. At her first visit with the pediatrician, I told him that something was not right -- her stomach was so big and the back of her hands were funny colors. He didn’t think she needed any tests, that she was fine. So I looked up on the Web all of the things that jaundice could mean and found a pretty term -- Biliary Atresia – that had symptoms similar to Khalieghya’s, so I printed the article and took it to her pediatrician. He told me I was reading too much into things.