ur son was born with a rare disease called Alpha1 Antitrypsin Deficiency.  He was jaundice when he was born and seemed to get more yellow as the days went by.  We did a simple blood test when he was 6 weeks old which confirmed the disease.

 

The next week we did a liver biopsy which again confirmed the A1AD along with the fact he did have some scarring. The Dr's kept telling us most people do OK, but the only cure was a liver transplant,. We did lots of research and didn't find out a much  information on the disease, it is so rare.  We had information sent to us from the A1AD Foundation and was able to get in with a Dr. that was researching A1AD and also was a GI Dr.  We had to travel to St.Louis for many Dr visits.  He continued to grow but stayed jaundice- we had labs done once a month, as long as he stayed well.  He had several upper respiratory infections throughout that next year. 

 

 In February 2004, Roman caught a virus that was going around at Church, his stomach got bigger and he was very lethargic for two weeks.  We took a trip to St. Louis to see our doctors.  While in St. Louis we learned that his liver was not working and Roman had developed asciteies. 

 

On March 4,2004 we found out Roman needed a liver transplant, he needed to receive a transplant in 9 months or he would be too sick to get one.  The news devastated us. Roman had his transplant evaluation  and was put on the waiting list.  While we waited for a new liver,  Roman continued to get worse.  Roman had unexplained fevers that landed us in the ER The veins on his cheeks, chest and stomach seemed to be showing up more and even spreading. His stomach was so big he could never wear anything but one piece outfits.  His liver and spleen were four and five times bigger than they should have been which caused him to breath heavy. The liver and spleen were so large he lost over 50% of his lung capacity. 

 

We decided to move forward with testing family members for a living donor.  We soon found out Roman's Dad, Steven was a match.  A few simple test where done and six months later we made our way to St. Louis Children's Hospital for the transplant.  I was so thankful he was a match, but really scared because Steven had always been with me at Roman's doctors appointments.  God gave me a peace and showed me that it was Him I needed to lean on and not my Husband for strength. 

 

Steven donated 25% of his liver and left the hospital 5 days later.  Roman did wonderful and was out of the hospital 9 days.  He has had no bouts of rejection.  He has had a few bile duct issues and needed to have a stent put in for 8 months and has a parasite contracted from water.  It has been a long 4 years for our family and Roman has gone through more than most do in a lifetime. God has a  purpose for Roman's life and ours and we want Him glorified through all we do.  Roman is now a strong and active 6 1/2 year old boy who likes to play with his dog Rocky and 2 older brothers.  

   

We have a website set up for others to keep updated through Roman's life and links that can point you in a direction if you are dealing with A1AD or  having a Liver Transplant.  www.romanholden.com.