A Rough Start-

Cole was born six weeks premature on July 17, 2002 at Carolinas Medical Center in Charlotte, NC. After two weeks in the NICU fighting respiratory distress, we thought the worst was behind us. How naïve we were. In September, Cole was diagnosed with a rare liver disease called biliary atresia (BA). Only 1 in 15,000 babies are born with this disease.  The cause is unknown.  The disease destroys the bile ducts to the point that bile can no longer flow out of the liver.  The only true "cure" for the disease is a liver transplant.  However, there is a surgical procedure called the Kasia where they use a piece of the intestine to create a new "drain" in place of the bile ducts.  This remedy is not without a host of potential complications, but it can buy us time before a transplant would be needed.

Cole’s direct bilirubin was just slightly elevated at 1.6 when he was discharged from the hospital after his birth. Cole never exhibited any other physical signs of biliary atresia. (i.e. stools were yellow, he had no jaundice, and relatively low bili levels) and in fact an early ultrasound (performed at 2 weeks old) revealed a gallbladder and common bile ducts. None of the GI doctors in Charlotte or at Johns Hopkins seemed to think it was BA. Yet a HIDA scan performed on 09/13 showed no tracer beyond the liver. BA was then suspected. We went directly to Johns Hopkins where the diagnosis of biliary atresia was confirmed and Dr. Henry Lau performed the Kasia procedure on 09/20 when Cole was 9½ weeks old. Cole’s direct bili peaked at 3.8 prior to surgery.

The Statistics -

Of the kids with this disease, 66% will need a liver transplant before their teens.  A third get poor bile drainage and will need a liver by 1 or 2 years old. Another third will get some bile drainage and need a liver by around 5 or 6. And the final third will get good drainage and go into their teens. Of the kids in their teens, many will eventually go on to require a transplant.

The Cure-

The liver performs many functions and aside from the brain is the most complex organ in the body.  Therefore the liver is a very difficult organ to repair. In most cases the best solution to a liver problem is transplantation. Transplantation is the only true cure for biliary atresia. The first liver transplant was performed in 1963. The waiting list for liver transplant is large. There are 17,500 men, women and children on the list for livers alone. In 2001 there were only 6,500 cadaveric organs available. This number is for all organs. So you can see we need people to give the gift of life and become an organ donor. Today alone, 16 people will die waiting for an organ. These numbers are unacceptable. This is one reason that prompted research into living organ donation. The first living liver transplant was performed in 1989. Both Del and I would be potential candidates for donation.

The Donation-

The first criteria for living donation is blood type. Cole is O positive as are Del and myself. Tissue type and general health are also extremely important. Other tests which the donor would undergo include angiogram, CT scan, MRI, liver biopsy, and  psychological evaluation. The risks for the donor are minimal. The donor typically is out of the hospital in about a week, and will fully recover in 6 to 8 weeks. An amazing note about the liver is that the donors liver will regenerate in 4-6 months. Follow this link for more information about living liver donation. (www.livingdonorsonline.com). However, most transplant hospitals prefer to wait for a cadeaveric (deceased) donor liver to become available. A cadeaveric organ is preferred for a variety of reasons. It comes with all "the parts", it is an easier operation, there is only one patient as opposed to two (living donor). And most importantly, if there is a drastic problem with the cadeaveric organ than an immediate replacement is available with the living donor. The decision becomes when do we think Cole is getting to sick to wait any longer. In order to move up on the list Cole will need to get sicker, but if he gets too sick the transplant may meet complications or be unsuccessful or even worse; to sick to get transplanted. At what point do we take our chances and go ahead with a living donor operation? We hope to wait until Cole is at least a year old. After transplant he will be unable to be vaccinated because of the immunosuppressant drugs he will be on. This is a decision we pray about. A LOT!

Recent tests have shown Cole's condition is deteriorating. He is currently on "the List" and waiting for his gift of life.

Restored faith-

We know that God has a master plan for Cole and our family. Cole's illness has actually restored our faith - we know God alone is in control, this is part of His plan. We see God's work everyday in the lives Cole touches and the people we witness to. We ask that you please pray for Cole and our family. Prayer is a powerful thing - and God has answered all of our prayers, but one; and in His perfect timing that prayer will be answered also.

Renewal-

Since we began this journey in July 2002, we have seen how God has used this to His glory. Our family has grown closer to Jesus and each other. God's perfect plan has woven many wonderful people into our lives. Cole's story has touched thousands of others. Praise God for being such a wonderful, compassionate and merciful God; who through trial and suffering molds us to His image. The power, honor and glory go to Him and Him alone.

The Transplant-

On August 14, 2003, Cole received his miracle transplant. His daddy was the donor. After several trials, both daddy and Cole recovered from surgery. Cole's new liver is working perfectly and he is growing and thriving. There is always the possibility that one day, Cole may reject his daddy's liver, but our faith lies in the fact that God's plan, no matter what, is perfect and He will never forsake us. Please continue to pray for Cole.

Read Cole's journal for updates.