2019 LIVEr Champion – Pacific Coast
In August 2007, Avery and her twin sister, Devyn, were born only three weeks early. All was normal in the beginning; there was a tad bit of jaundice in both babies, but we were sure that it was nothing that wouldn’t be taken care of by a little laying in the sunlight. As time went on, things seemed to progress normally and then at approximately ten weeks, Avery began having trouble keeping milk down and would constantly throw up. Next, she started having light stools, which was odd and troubling. Needless to say, we took her into the pediatrician, who recommended blood work as well as an ultrasound, as she thought it had to do with the flap to her stomach not opening and allowing the milk to enter her stomach. Around 7 pm the night of her tests, we received a call from the pediatrician herself stating that we needed to get Avery to Children’s Hospital as soon as possible because her Bilirubin level was extremely high. Talk about panic as a parent!
After going to the ER at Rady Children’s Hospital and being admitted to a room, in approximately 24 hours, it was determined that she might have Biliary Atresia (which occurs in 1-20,000 children) and that she needed the Kasai procedure immediately. What was supposed to be a 2-3 hour surgery, turned into a grueling 7-hour wait. When she came out of surgery, the doctors were confident things went well. The surgeon stated that she had cirrhosis of the liver. We were stunned: At 11 weeks old? How was that possible? They removed her gallbladder and her bile ducts, which never opened, therefore causing her cirrhosis and biliary atresia. They then attached her intestine directly to her liver. The hope was that what little good liver tissue there was, would start to regenerate itself, and the bile would flow directly from the liver to the intestine. We spent nine days in the hospital, and that was the first time the twins were separated.
The prognosis we were given was “one-third, one-third, one-third,” which meant that one-third of the children who had the procedure would do great, and not have to have a transplant in the future. Although the operation was still fairly new, so there still weren’t enough studies to see past 20 years. Another one-third of the children who had the procedure would do well for a while and then eventually need a liver transplant. For the final one-third, the surgery simply wouldn’t work, and the patient would need a transplant very soon.
Luckily, so far, Avery seems to be part of the one-third that is thriving and doing well. She is now 11 years old and a very active, spunky, smart little 6th grader. We see her GI specialist every six months to a year now. She is on URSO medication twice a day (and still consistently needs to be reminded to take it). We just went to see her GI doctor at the end of October. He was so impressed with her; he said her test results and levels were BETTER than normal! We were absolutely thrilled to hear this news!
After having this experience, I wanted to get involved and try and give back, since the doctors over at Rady Children’s Hospital gave my precious baby back to me. After looking around my area, I found the American Liver Foundation, and we participated in our first Liver Life Walk in 2012 and have been active ever since. Please consider donating to this wonderful cause and joining us in the fun and exciting Liver Life Walks each year.
Avery & Sunny Elguez