This is Dylan. He was born with Biliary Atresia and like most with this, he needed a liver transplant. This site is here to keep everyone up to date on what we are going through. Thanks for visiting.
Background Story on Dylan, he was born June 15, 2005. With some minor complications after delivery (infection of amniotic fluid) we went home two very proud and happy parents. We did not know at the time, but they had ran a bilirubin test and his direct bilirubin was a 2...well above normal.
At about two weeks of age Dylan started crying at all times...no make that screaming. Dylan was fed on a demand basis, so he nursed at least every 30-45 minutes. He started having trouble sleeping. We took him in and were told he just had colic and to try to space his eating out more. The screaming continued but I ignored the doctor's orders on spacing Dylan's meals, I was not about to have my child scream all night. Another week passed and Dylan developed a terrible rash all over his body. We took him in again and were told it was a heat rash. We tried to keep Dylan as cool as possible over the next couple weeks. We were beginning to think we were crazy. That maybe we were being paranoid and that it was because we were first time parents, but could not shake the feeling that something else was going on. The next issue was hard to ignore...Dylan had started having large green balls in his diaper. We had never seen anything like this. We knew something was wrong. I took a diaper into the doctor to have him look at it. He was beyond concerned. Dylan not only had the alien like things in his diaper, but they were also acholic. There was no bile at all. That would be the beginning of the life we know now.
Dylan had weeks worth of lab draws and tests. HIDA scans, ultrasounds, x-rays, endless blood work. You name it it was done. Terms were thrown at us. ALT, Alkaline Phosphate, Bilirubin...what on earth was wrong with our baby? We were then sent to a pediatric gastroenterologist, Dr. Edward Rich. Dr. Rich took one look at Dylan and told us our child had Biliary Atresia. Bili What? What was that? Biliary Atresia is a congenital defect of the liver. Children with BA are born with little to no bile ducts and the bile has no way of leaving the liver. The liver then starts to poison the child. With no medical intervention the child will not survive. We were told Dylan would need a liver biopsy, cholangiogram, and possibly a surgical procedure to help correct this, the Kasai. Dr. Rich also informed me to feed Dylan every time he cried as children with Dylan's condition have trouble digesting fat.
Dylan went 24 hours with nothing to eat and was only allowed pediaylte for up to 4 hours before. This was a terribly hard task for a baby who eats every 45 minutes. The anesthesiologist took our baby and he went in for surgery. About 2 hours into surgery we got word that it was in fact Biliary Atresia (to learn more about BA click on the About BA page) and that they would be performing the Kasai procedure. When the surgery was over Dr. Williams, Dylan's surgeon, came out to talk to us. She told us that Dylan had little to no bile flow and that she had to remove a lot of his liver to get any bile to flow at all. She warned us that we might be facing liver transplant right away, but we would have to see what the labs looked like. We spent 4 days in the hospital and were sent home.
Dylan's labs took several months to come down, but it looked like his Kasai was starting to work and he would have sometime before transplant. Dylan has a lot of damage done to his liver. There would be a lot of scar tissue that would develop. For the past five years we have checked his labs on a monthly basis. Dylan has had several hospital stays due to infection. Dylan has taken 6 different medications to help minimize the symptoms related to his cirrhosis. He has been medically managed. It was just recently that there has been a turn in his health, a turn for the worst.
On October 21, 2010 Dylan suffered a massive GI bleed. Dylan lost half the volume of his blood and required a blood transfusion. We were rushed by ambulance to the ER and then transferred to another hospital for a 4 day stay. The bleed occurred due to pressure building up in the veins of Dylan's liver called portal hypertension. This is a direct result of his cirrhosis. Dylan was listed for transplant and Noah (his dad) was worked up for donating a portion of his liver to him, as it was this was the only solution for him long term. There were other surgical procedures that could of helped with the portal hypertension, but were too risky for Dylan when he was in that fragile state, his only option was for a new liver. Dylan's life changing Transplant was performed on February 7, 2011.
Dylan is an inspiration to us. He will beat Biliary Atresia one day, we will make sure of it.
To learn more about Dylan and keeping up to date with how things are going, please visit the Journal page.
Background Story on Dylan, he was born June 15, 2005. With some minor complications after delivery (infection of amniotic fluid) we went home two very proud and happy parents. We did not know at the time, but they had ran a bilirubin test and his direct bilirubin was a 2...well above normal.
At about two weeks of age Dylan started crying at all times...no make that screaming. Dylan was fed on a demand basis, so he nursed at least every 30-45 minutes. He started having trouble sleeping. We took him in and were told he just had colic and to try to space his eating out more. The screaming continued but I ignored the doctor's orders on spacing Dylan's meals, I was not about to have my child scream all night. Another week passed and Dylan developed a terrible rash all over his body. We took him in again and were told it was a heat rash. We tried to keep Dylan as cool as possible over the next couple weeks. We were beginning to think we were crazy. That maybe we were being paranoid and that it was because we were first time parents, but could not shake the feeling that something else was going on. The next issue was hard to ignore...Dylan had started having large green balls in his diaper. We had never seen anything like this. We knew something was wrong. I took a diaper into the doctor to have him look at it. He was beyond concerned. Dylan not only had the alien like things in his diaper, but they were also acholic. There was no bile at all. That would be the beginning of the life we know now.
Dylan had weeks worth of lab draws and tests. HIDA scans, ultrasounds, x-rays, endless blood work. You name it it was done. Terms were thrown at us. ALT, Alkaline Phosphate, Bilirubin...what on earth was wrong with our baby? We were then sent to a pediatric gastroenterologist, Dr. Edward Rich. Dr. Rich took one look at Dylan and told us our child had Biliary Atresia. Bili What? What was that? Biliary Atresia is a congenital defect of the liver. Children with BA are born with little to no bile ducts and the bile has no way of leaving the liver. The liver then starts to poison the child. With no medical intervention the child will not survive. We were told Dylan would need a liver biopsy, cholangiogram, and possibly a surgical procedure to help correct this, the Kasai. Dr. Rich also informed me to feed Dylan every time he cried as children with Dylan's condition have trouble digesting fat.
Dylan went 24 hours with nothing to eat and was only allowed pediaylte for up to 4 hours before. This was a terribly hard task for a baby who eats every 45 minutes. The anesthesiologist took our baby and he went in for surgery. About 2 hours into surgery we got word that it was in fact Biliary Atresia (to learn more about BA click on the About BA page) and that they would be performing the Kasai procedure. When the surgery was over Dr. Williams, Dylan's surgeon, came out to talk to us. She told us that Dylan had little to no bile flow and that she had to remove a lot of his liver to get any bile to flow at all. She warned us that we might be facing liver transplant right away, but we would have to see what the labs looked like. We spent 4 days in the hospital and were sent home.
Dylan's labs took several months to come down, but it looked like his Kasai was starting to work and he would have sometime before transplant. Dylan has a lot of damage done to his liver. There would be a lot of scar tissue that would develop. For the past five years we have checked his labs on a monthly basis. Dylan has had several hospital stays due to infection. Dylan has taken 6 different medications to help minimize the symptoms related to his cirrhosis. He has been medically managed. It was just recently that there has been a turn in his health, a turn for the worst.
On October 21, 2010 Dylan suffered a massive GI bleed. Dylan lost half the volume of his blood and required a blood transfusion. We were rushed by ambulance to the ER and then transferred to another hospital for a 4 day stay. The bleed occurred due to pressure building up in the veins of Dylan's liver called portal hypertension. This is a direct result of his cirrhosis. Dylan was listed for transplant and Noah (his dad) was worked up for donating a portion of his liver to him, as it was this was the only solution for him long term. There were other surgical procedures that could of helped with the portal hypertension, but were too risky for Dylan when he was in that fragile state, his only option was for a new liver. Dylan's life changing Transplant was performed on February 7, 2011.
Dylan is an inspiration to us. He will beat Biliary Atresia one day, we will make sure of it.
To learn more about Dylan and keeping up to date with how things are going, please visit the Journal page.