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.

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 a.m. She went into surgery at 4:30 p.m. Things went well to start, but about 11 p.m., we had bad news, the new liver didn't work. Her blood wasn’t clotting and she was pouring out as much blood as the doctors could push in. She was exchanging her entire blood volume every hour. We were told that it didn't look good and 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. A miracle happened next. A child at the same hospital was taken off life support. Jessica received that liver. It was not a first choice; it was the only choice. The liver was from a 2 year old, so much smaller than really needed and the wrong blood type, but her only chance to come back to us. Needless to say, we were up the whole time. She came out of surgery at 6 a.m. 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 comeback after this.

For the next 2 weeks things went well and we naively thought we were well on our way to an easy recovery. Jessica moved down to the 5th floor and then disaster struck.  On Sunday, Feb. 12, at midnight we received a call to come back to the hospital because Jessica was in a great deal of pain.  This was a girl that never complained about pain and was saying that on a scale of 1 – 10 her pain was a 12! Since the shuttles from Ronald McDonald house had stop running Jim went over by himself.  It was immediately obvious that there was something horribly wrong.  Her blood pressure was falling, pulse way up, her stomach distended and she was in a lot of pain.  The floor doctor was no help; just wait till the morning when the surgeons makes rounds was all he would say.  Luckily, Jim saw one of her ICU Doctors come in and urged him to come into the room to look at her.  Jim told him not to look at the chart but to look at Jessica. She was going into shock and would die if they didn’t act fast. Her pulse had climbed to 188 and her blood pressure was bottoming out.  The ICU doctor called to get her moved back to ICU but at 2 in the morning everything was moving in slow motion.  Up in ICU her blood pressure was 40 over 20 and two nurses were squeezing blood bags to get more volume in her.  She had gotten a hospital staph infection and went into septic shock.  Jim said this was the scariest and worst night of his life.  He had work ER in the Navy and knew it would only be with another miracle that she would survive.  God must have a great plan for Jessica because he spared her again. 

She was such a mess that they told us they needed to keep her in a coma for a week to try and save her but they were still not sure it was possible.  By the end of the fourth day they felt she was out of immediate danger but still very, very sick.  As the following week passed she rallied and got strong again.  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. 

Again with her increasing health our hopes soared that the worse was behind her and Jessica would make a steady recovery.  Unfortunately, her trials were not over.  Jessica went through a three-week period where she required major abdominal surgery every four days.  Growing weaker and weaker in body and spirit we watched her wonderful spark of living fade into a dull mask of survival.  People asked us 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, all the leaks but one were found and she again stabilized.  A single drain was put in to collect the fluid from the leak.  Jessica had too many surgeries in that area and they did not think she would survive one more.  

Recovery has been slow; sometimes it seems to be at a stand still.  But Jessica finally came home on the 26th of April.  Three month of hell that no child should ever have to go through.  Her kidneys died and she will require a transplant when she got stronger.  Until the transplant, she’d have kidney dialysis 3-4 times a week.

She was accumulating fluid in her chest.  This problem has cost her hospital stays of three, eight and nine days.  During the nine-day stay they removed two liters of fluid, and the eight-day stay was even more serious with 500-700 ml of fluid around her heart. She had trouble breathing.  She was getting fed through a feeding tube at night to help her get healthier for the kidney transplant. The kidney dialysis was impacting her will to eat.  

We’ve had an extremely up and down 2006. We started off with Jessica’s chest wall being repaired (sounds like car problems!). We were in the hospital for 6 weeks that time. In March her liver numbers were up. She was admitted twice.  Cincinnati did several biopsies and said there were abnormal cells and wrote it down as rejection, though after putting her on steroids, they took her back off as soon as they could wean her down (that indicates to us that it wasn’t a true rejection). One of the biopsies caused a fistula (leak). That had to be watched to make sure it didn’t get any bigger.

We were out of the hospital most of the time in 2006 (especially compared to 2005).   There were several times where we were supposed to have the kidney transplant done, but things happened. The beginning of June was too soon.  We went to get the kidney transplant at the end of July, but after having me hooked up to IV and getting ready to go into surgery, they found out that Jess had a fever.  Jessica’s dialysis catheter was infected. They pulled it and put a new one in on the 10th of August. The transplant was delayed again. 

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 and it may have done some damage to the kidney, but they’re not 100% sure.

Jessica is doing extremely well. Her story is being published by Tate Publishing in OK. The release date to the book stores is December 15, 2009.

We have books available through JTO Enterprises, LLC. Please send an email to: . 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

Thanks again for reading her story and hopefully making others aware of the great need for organ donation.

Please sign the Donor registry for your state and make your family aware of your wishes. You can be a hero and save someone’s life, someone like Jessica.

A Reminder: Organ Donation Is Truly the Gift Of Life

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