Inspire, Winter 2006

Roman's Road by Steven Holden '93 as shared 0 ur third and youngestson,Roman,was born on August 23,2001.While most"birthdays"are uneventful,that day marked the beginning ofa trial unlike any I had previously known. Ourjourney started when the phone rang in my wife's hospital room.It was our pediatrician letting us know that Roman wasjaundiced and would require an extra day at the hospital to receive appropriate treatment.The news shocked us as we had two healthy children who never required anything beyond normal checkups. We spent the next two nights in the hospital before Roman was discharged to go home with ultraviolet treatments to continue for the next several days.After we completed the treatment,Roman'sjaundice was still present.We were assured it would subside soon,but almost six weeks later,he was still bright yellow with no explanation from the pediatrician. Then God intervened. Michelle was dropping offclothes at the dry cleaner when the lady behind the counter struck up a conversation and asked about Roman'sjaundiced appearance. Michelle explained our situation and our confusion over what to do about it. The lady shared that her grandson had identical symptoms and told us exactly what tests were needed.We shared her insights with our doctor and learned she was right! As it turns out,that day was the lady's last day ofwork at the dry cleaner.That was a divine appointment ifthere ever was one! The tests showed that some ofRoman's blood levels indicated he was having liver problems and needed to have an emergency liver biopsy.The biopsy showed that Roman was born with the genetic condition alpha one antitrypsin deficiency,or A1AD.Michelle and I apparently carry a recessive gene that,when combined together,does not allow Roman's body to produce much-needed protein to protect and clean his liver. The only known cure for the disease was,and is,a liver transplant. Words cannot describe the impact ofhearing"liver transplant"in reference to your own child.We were devastated. In response I prematurely decided that the doctor was wrong and the lawyer in me was going to prove it. By his own admission,the doctor was inexperienced with A1AD,and therefore I concluded that he simply did not know what he was talking about.The evidence,in my estimation,was insufficient and merited a second opinion. Unfortunately,there were no other doctors experienced with treating A1AD in Oklahoma.So we took to the Internet to find out everything we could and where we could go for help.Again,God stepped in.At the time,there was only one physician in the entire United States researching the disease. 24 Winter 2006 with Cessna Catherine Winslow GOOD for you. Our youngest son,Roman, was born with a rare disease that could only be cured with aliver transplant.We waited on the national transplant waiting list for six months until we found out that Roman'sdad, Steven,was a match and could be Roman's do- nor.The plan was to remove 25% ofSteven's liver and transplantit into Roman.We were very unsure about them both going into surgeryatthe same time,butwith wonderful doctors and the supportoffamily and friends, God healed ourson through a living donor transplant in Augustof2004.Now Roman is a strong,healthy5-year-old who loves to play with his two older brothers. Organ,eye and tissue donation saves lives. Please make yourdecision to donate life,and then tell your family! The Global Organization for Organ Dona- tion,GOOD,is a not-for-profit organization dedicated to raising public awarenessfor or- gan,eye and tissue donation.Please visit us at global-good.org or by calling918-745-6637or call LifeShare ofOklahoma 1-888-580-5680 x.120or x. 123.To register to be a donor,go to lifeshareregistry.org GOOD for life. Thankfully he was in St. Louis,Missouri— only seven hours from our home. Our first appointment was in March 2002.After examining Roman,the doctor sent us home saying he wanted to monitor him with monthly blood work and semi-annual physical exams.During that time,all we could do was wait and watch. Six months passed,and though the jaundice subsided,Roman's stomach increasingly became distended and enlarged. His blood work was never good news. The following February,just before one ofRoman's exams, a flu bug was going around.Roman caught it. While for most people it was a four-day virus,Roman wasimmobile for two weeks.During that time,his stomach enlarged even more,and it appeared he was retaining fluid,which was a clear indication that his liver was going into failure. With that change in his condition,the monitoring phase ended and direction started. At that appointment,several doctors examined Roman.The last was the chiefsurgeon for the pediatric liver transplant team.After examining Roman,he explained that our 21/2-year- old son needed a liver transplant.Roman could not wait any longer,and he was placed on the transplant list. The verdict that I had earlier refused to accept was now final. I was numb, speechless,and gasping for air. Amazingly,we got even worse news the next day.Our insurance companyinformed us that the doctors in St. Louis would not be allowed to perform the transplant.Instead we had to choosefrom their select list oftransplant centers,the closest being in Omaha,Nebraska.We took Roman for a three- day transplant assessment the first week ofMarch.We returned home feeling unsettled about the Omaha facility. Wejust didn't