This is a story that is very close to my heart! Holly Jo Karren is my cousin and she is on a mission to encourage mothers everywhere to make sure to take there kids to check ups. This story was published in the Herold Journal in Logan, UT. Im so proud of her and Easton and what fighters they are!! Just though id share!!
A battle against Biliary Atresia
By Jen Beasley
Published:
Tuesday, April 15, 2008 2:09 AM CDT
HollyJo Karren had known her son Easten for two months before she learned one of the most important things about him: He was born without a gall bladder.A piece of equipment probably not considered by most, the gall bladder serves as a “waste dump” for bile produced by the liver. When absent, the liver has nowhere to turn and the bile — an acidic liquid used to aid digestion and waste disposal — gets stored within the liver and bloodstream, leading to jaundice, cirrhosis of the liver, and in infants, eventual death.Easten’s absent organ was caused by a congenital condition called biliary atresia, in which the bile ducts and gallbladder are blocked or absent.It’s a rare condition — estimates range from one in every 10,000 to one in every 20,000 live births — and the cause is unknown, but it is not thought to be genetic.
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The condition was spotted at his two-month checkup, in the nick of time to get Easten essential surgery. Karren, who is a CNA and used to work in the very doctor’s office where Easten’s condition was first spotted, is now on a crusade to encourage other parents to get their infants to that two-month checkup.“Basically I felt really responsible as a mother to tell other mothers,” Karren said. In her experience as a CNA, Karren said people would go on vacation, or something would come up, and they’d miss the vital appointment.The checkup is important, Karren said, because if an infant has biliary atresia, between the ages of 2 to 3 months is the time to get a surgical procedure called a Kasai, in which a bile passage is created between the liver and the intestines. Otherwise, built-up bile in the liver may cause too much cirrhosis, and the child can die. Many children with biliary atresia are never diagnosed and their deaths are attributed to SIDS (Sudden Infant Death Syndrome), Karren said.“If (parents) can find out, then there’s a hope of getting them better,” Karren said.Karren said Easten’s doctor, Craig Armstrong, had only ever seen the condition once during his residency.“It’s just one of those things where you’re so thankful they have that kind of education,” Karren said. “I totally credit Dr. Armstrong with saving his life.”Without the catch at the two-month checkup Karren might not have known about Easten’s condition. Easten was yellowish, she said, but not “yellow like a crayon” like some of the jaundiced children she has since seen during her visits with Easten to Primary Children’s Medical Center. And her older son had cried wolf with a yellow complexion, leading to Karren’s reticence to have Easten checked out.“My other little boy looked jaundiced when he was really little and I had him poked, like, all the time,” Karren said. “But he just had that olive complexion from (his father). So with this one I was like, there’s no way I’m getting him poked, no way.”In spite of his only lightly yellowed complexion, Karren said when Easten was finally tested, the level of bile in his blood, called bilirubin, was at an eight. Jaundiced children normally fall within a one or a two, by comparison.“He was toxic,” Karren said. “They had no idea why he was still here.”Within two weeks of Easten’s diagnosis he had undergone a seven-hour Kasai surgery which was followed by a blood transfusion.“You’re thinking, OK, I’ll wake up in a minute, you know what I mean?”Karren said of the whirlwind. “There’s no way this could happen to my child.”But Karren wants parents to know it can. She recommends looking for a distended belly, yellowing eyes and chest, and lesser symptoms like irritability and itchiness.After a trip to the hospital every eight days between the months of August and December, Karren said Easten has not been back since Dec. 22.He is 10 months old now, but the toll of frequent hospital visits and difficulty gaining weight due to his condition has him at a feathery 14 pounds, about the weight of a 4-month-old.“Mentally everything’s there,” Karren said, “but he is so far behind from being in the hospital that long.”Easten was on steroids for a time, which meant he could not get his immunizations because it would compromise doctors’ abilities to read his symptoms and assess whether he had fevers from the vaccinations or something more serious. Because he was immuno-compromised, the Karrens have been forced to ask friends and family to stay at a distance, though they thank them for their kind thoughts, Karren said. Easten has begun his series of vaccinations now, and should be ready for the public in a month or so.“We’ll be able to go outside,” said Karren.Overall, Karren said, Easten is getting by with “flying colors.”Prescriptions are down from 15 to eight. Karren still maintains a feeding tube that goes from Easten’s nose into his stomach — “he’s a booger, he pulls it out two or three times a day.” She said she was originally uncomfortable with the idea of the feeding tube and the risk of inserting it accidentally into his lungs, which can fill them with liquid, but “you do what you have to do for your kids. It’s just amazing he’s come this far.”Eventually the Kasai procedure, a sort of “Band-Aid,” may fail, Karren said, forcing Easten to undergo a liver transplant. Karren said if that happens, Easten must be 1 years old to receive a liver segment from a live donor. Otherwise, he’ll need a cadaver organ, which will be harder to come by.It’s possible he’ll need several liver transplants in his lifetime, but some children with biliary atresia only need one. Karren said he should be a basically healthy child after that, but won’t be able to play contact sports.She doesn’t know yet if she or her husband are a match to be donors because insurance won’t pay for the tests until Easten is in liver failure. But she said she hopes they will be, and hopes the Kasai last at least until the live-donor mark, where his prognosis will be better.“That’s why I get so worried, for me it’s like, OK, December he’ll be a year and a half,” Karren said. “You just wish the time away.”
By Jen Beasley
Published:
Tuesday, April 15, 2008 2:09 AM CDT
HollyJo Karren had known her son Easten for two months before she learned one of the most important things about him: He was born without a gall bladder.A piece of equipment probably not considered by most, the gall bladder serves as a “waste dump” for bile produced by the liver. When absent, the liver has nowhere to turn and the bile — an acidic liquid used to aid digestion and waste disposal — gets stored within the liver and bloodstream, leading to jaundice, cirrhosis of the liver, and in infants, eventual death.Easten’s absent organ was caused by a congenital condition called biliary atresia, in which the bile ducts and gallbladder are blocked or absent.It’s a rare condition — estimates range from one in every 10,000 to one in every 20,000 live births — and the cause is unknown, but it is not thought to be genetic.
= 1204351200) && (nAdsysTime = 1204351200) && (nAdsysTime = 1204351200) && (nAdsysTime = 1204351200) && (nAdsysTime = 1202882400) && (nAdsysTime = 1204524000) && (nAdsysTime = 1204524000) && (nAdsysTime = 1204869600) && (nAdsysTime = 1205298000) && (nAdsysTime
The condition was spotted at his two-month checkup, in the nick of time to get Easten essential surgery. Karren, who is a CNA and used to work in the very doctor’s office where Easten’s condition was first spotted, is now on a crusade to encourage other parents to get their infants to that two-month checkup.“Basically I felt really responsible as a mother to tell other mothers,” Karren said. In her experience as a CNA, Karren said people would go on vacation, or something would come up, and they’d miss the vital appointment.The checkup is important, Karren said, because if an infant has biliary atresia, between the ages of 2 to 3 months is the time to get a surgical procedure called a Kasai, in which a bile passage is created between the liver and the intestines. Otherwise, built-up bile in the liver may cause too much cirrhosis, and the child can die. Many children with biliary atresia are never diagnosed and their deaths are attributed to SIDS (Sudden Infant Death Syndrome), Karren said.“If (parents) can find out, then there’s a hope of getting them better,” Karren said.Karren said Easten’s doctor, Craig Armstrong, had only ever seen the condition once during his residency.“It’s just one of those things where you’re so thankful they have that kind of education,” Karren said. “I totally credit Dr. Armstrong with saving his life.”Without the catch at the two-month checkup Karren might not have known about Easten’s condition. Easten was yellowish, she said, but not “yellow like a crayon” like some of the jaundiced children she has since seen during her visits with Easten to Primary Children’s Medical Center. And her older son had cried wolf with a yellow complexion, leading to Karren’s reticence to have Easten checked out.“My other little boy looked jaundiced when he was really little and I had him poked, like, all the time,” Karren said. “But he just had that olive complexion from (his father). So with this one I was like, there’s no way I’m getting him poked, no way.”In spite of his only lightly yellowed complexion, Karren said when Easten was finally tested, the level of bile in his blood, called bilirubin, was at an eight. Jaundiced children normally fall within a one or a two, by comparison.“He was toxic,” Karren said. “They had no idea why he was still here.”Within two weeks of Easten’s diagnosis he had undergone a seven-hour Kasai surgery which was followed by a blood transfusion.“You’re thinking, OK, I’ll wake up in a minute, you know what I mean?”Karren said of the whirlwind. “There’s no way this could happen to my child.”But Karren wants parents to know it can. She recommends looking for a distended belly, yellowing eyes and chest, and lesser symptoms like irritability and itchiness.After a trip to the hospital every eight days between the months of August and December, Karren said Easten has not been back since Dec. 22.He is 10 months old now, but the toll of frequent hospital visits and difficulty gaining weight due to his condition has him at a feathery 14 pounds, about the weight of a 4-month-old.“Mentally everything’s there,” Karren said, “but he is so far behind from being in the hospital that long.”Easten was on steroids for a time, which meant he could not get his immunizations because it would compromise doctors’ abilities to read his symptoms and assess whether he had fevers from the vaccinations or something more serious. Because he was immuno-compromised, the Karrens have been forced to ask friends and family to stay at a distance, though they thank them for their kind thoughts, Karren said. Easten has begun his series of vaccinations now, and should be ready for the public in a month or so.“We’ll be able to go outside,” said Karren.Overall, Karren said, Easten is getting by with “flying colors.”Prescriptions are down from 15 to eight. Karren still maintains a feeding tube that goes from Easten’s nose into his stomach — “he’s a booger, he pulls it out two or three times a day.” She said she was originally uncomfortable with the idea of the feeding tube and the risk of inserting it accidentally into his lungs, which can fill them with liquid, but “you do what you have to do for your kids. It’s just amazing he’s come this far.”Eventually the Kasai procedure, a sort of “Band-Aid,” may fail, Karren said, forcing Easten to undergo a liver transplant. Karren said if that happens, Easten must be 1 years old to receive a liver segment from a live donor. Otherwise, he’ll need a cadaver organ, which will be harder to come by.It’s possible he’ll need several liver transplants in his lifetime, but some children with biliary atresia only need one. Karren said he should be a basically healthy child after that, but won’t be able to play contact sports.She doesn’t know yet if she or her husband are a match to be donors because insurance won’t pay for the tests until Easten is in liver failure. But she said she hopes they will be, and hopes the Kasai last at least until the live-donor mark, where his prognosis will be better.“That’s why I get so worried, for me it’s like, OK, December he’ll be a year and a half,” Karren said. “You just wish the time away.”
7 comments:
that is soo sad. I actually saw that in the paper today. my parents get it. I am sorry. He is such a cute little boy
You know what?? He is doing better than ever!! Just yesterday he went to the doctor and got his feeding tube out!!! YAY!! THey said that he could keep it out as long as he gains weight. I talked to my cousin today and she said that by 10 am he had already taken 3 bottles!!! That's a miracle!!!
Hey, did you know that is the Doctor's Office that I work at? Your cousin worked there before I started, but I have seen her and Easton before. (She probably doesn't know who I am, though). I didn't know you were cousins! I am glad that things are getting better.
I'm so glad that she had her baby checkups, sounds like he is doing great! Now she can have fun getting him chubby!
That is totally amazing. It is funny how as a mom you do get complacent about well check-ups. With my first I was a total Nazi about her dr. apts. By the time #4 came along, it was only for immunizations. Now I hear more and more of problems being picked up on at well checkups. This is a good reminder to be champions for our kids health.
Hey there, sad story but it's good to hear he is doing okay. Ok, I am adjusting okay I guess it is really hard though. Hope you are doing well.
Spencer has been taking his computer to school because he has had and still has a ton of tests right now. He's at study group so I thought I'd take the chance and check my email and blog. Sorry I haven't stopped in much, I have been thinking about you! I had a bunch catch up on! You & your family have all been so busy!
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