My daughter, Jessica, was born with Biliary Atresia, a liver disease that affects 1 in 20,000 births. Girls are affected slightly more often than boys, and no ethnic group appears to be more affected than any other. Biliary Atresia is not known to be hereditary. Jessica had a Kasai procedure at just under 7 weeks of age. Jessica did very well for the next 10 years, and then her health started to decline. She was being seen by UCLA 4 times a year to keep an eye on her and her condition. Her cognitive ability was declining, but she was not going on the list for a liver. We decided shortly after that to move. We chose Lexington, KY because it is only 2 hours away from Cincinnati Children’s Hospital, which is the third best liver transplant hospital for children.
We were seen by the new doctor at the end of July. They had us back within two weeks for a liver transplant work up to see if she could go on the list. She was on the list by September of 2004.
After 4 months of waiting, Jessica received a liver transplant on the night of January 25th/morning of January 26th, 2005. We arrived at Children’s Hospital in Cincinnati on January 25th, at 2:00am. She went into surgery at 4:30pm. Things went well to start, but about 11:00pm., we received bad news that the new liver didn’t work. Her blood wasn’t clotting, and we were told that it didn’t look good. We were told that there was nothing else they could do except for re-list her as a priority one – with basically no real hope for another liver in time.
Miraculously, another family said yes to organ donation, and an organ became available at this exact moment. This organ was not the first choice; it was the only choice. The liver was much smaller than we needed and the wrong blood type, but her only chance to come back to us. She came out of surgery at 6:00am to go to ICU. There were no guarantees. The doctors did not even hook up the bile ducts; they needed to get her out of surgery and into ICU as she’d been under for over 13 hours. There was a good chance that her kidneys wouldn’t come back after this.
Jessica kept fighting. The doctors shook their heads and said they had never seen a stronger willed child; and that was the only reason she has made it to this point.
People asked us, as her parents, how we could stand such a horrific time, but what choice did we have? Jessica needed us strong and positive and we were going to give her the best support, love and determination we possessed. Finally, she stabilized.
Jessica came home on the April 26, 2005. She endured three brutal months that no child should ever have to go through and because her kidneys stopped working, she would require a kidney transplant when she got stronger. Until the transplant, she had kidney dialysis 3-4 times a week. Luckily I, as her mother, was a match to donate my kidney to her.
We continued to have a long road ahead of us as Jessica recovered, but we were out of the hospital most of the time in 2006 (especially compared to 2005). On September 14th, Jessica got her kidney transplant. The day she was supposed to get out, Jess went into septic shock, though they caught it early, she was in the hospital for an extra week.
However, after all of these trials, Jessica is doing extremely well today. Jessica turns 18 next month and has been on the Lafayette Swim Team for the last 3 years. She will be taking school over the summer to graduate early and start college in the fall.
She plans on being a Forensic Pathologist.
Thanks for reading her story. We hope to make others aware of the great need for organ donation.
Please join the organ donor registry in your state. Make your family aware of your wishes. You can be a hero and save someone’s life. Someone like Jessica. Her story was published by Tate Publishing in OK.
We have books available through JTO Enterprises, LLC. Please send an email to: [email protected]. We accept Money Orders, Checks and PayPal. Out of state, the cost is $15.40 which includes media mail shipping. In Kentucky, the cost is $17.15, which includes state tax, and media mail shipping. If you wish to use a credit card, please use the link to Tate Publishing: http://www.tatepublishing.com/bookstore/book.php?w=978-1-60799-961-4
– Story by Tandy Owen, Jessica’s Mother