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     Tomorrow, December 1st, is the 4th annual National Day of BA awareness.  Early diagnosis is key in the survival of a baby with BA.  You could be the one to detect something is wrong with your child, grandchild, niece, nephew.  Maybe you could even save the life of a complete stranger's baby or the baby of a family friend.  Since Kinley has been doing well you may not realize that BA is fatal without surgical intervention. 
     Let me start by telling you about Kinley's early days.  She was born full term at 40 weeks 4 days.  She was 8lbs 5 oz.  The only complication I had while pregnant was anemia for which I took iron pills.  She was a little jaundiced at birth, but so was Reagan so I didn't think anything of it.  We took our 3rd "healthy" daughter home and I thought the biggest obstacle I faced was getting my 13 year old to accept the new baby.  I took Kinley to her 2 week well baby visit and if she was jaundiced, it wasn't very noticeable.  I was asked if she had yellow stools and I answered "yes" not realizing that the yellow he was asking about was a bright yellow, not the pale yellow stools like Kinley had.  Everything checked out good.  Since I bottle fed Kinley, she did not have to go back until she was 2 months old.  I scheduled the appointment, but for some reason that I cannot remember, she couldn't get in the week she turned 2 months, so she went the next week when she was 9 weeks old.  About 2-3 weeks before she her appointment I started to think she looked more jaundiced, but she didn't act like anything  was wrong, so I didn't really worry about it.  She ate well and slept well.  I couldn't remember how long it took Reagan's jaundice to clear since she was born 10 years earlier, but I knew it did and she was fine, so Kinley's would too.  Then an OB nurse that we know asked Troy if Kinley had always been jaundiced and he told me about her asking.  I thought, well, I will just asked the doctor about it when I take her in for her check up in a week or 2 since she is doing well otherwise. 
      When I took Kinley in for her 2 month check up I told the doctor I was concerned that she was still jaundiced expecting him to say it wasn't a big deal...until he felt her abdomen and said that her liver was enlarged and we needed to do labs immediately.  I looked at him and said, "She doesn't have Biliary Atresia, does she?"  He said he wasn't sure but felt like she would be more sickly if she did.  I already knew about Biliary Atresia because there is another case of it in my extended family, my second cousin's son.  I read all of his Caring Bridge updates as he was going through his battle and transplant.   
     Kinley's pediatrician called me back that evening after hours to tell me that her labs were very bad and that we needed to take her to a specialist immediately.  You see, with BA, the only treatment other than a liver transplant is a Kasai surgery which is usually only successful to buy some time before the liver transplant, but a Kasai surgery is most successful before 8 weeks old because the longer you go without it, the more damaged the liver is.  Since that was a Thursday, we kept Kinley home over the weekend and she was admitted to the hospital on Monday with testing and then had her Kasai on Thursday, at 10 weeks old.
     We have been lucky that Kinley's Kasai has been partially successful because she was diagnosed fairly late.  If she would have been more than 2 weeks older, they would have not even performed the Kasai and she would have been listed for transplant.  She may not have even lived long enough to get a transplant. 
     Please speak up if you notice that a baby is jaundiced after 2 weeks old.  If it is your baby take them to their doctor and request labs.  A high direct bilirubin is a sign of BA and often total bili is only checked.  Please feel free to tell anyone Kinley's story or give them my contact information if I can help in anyway.  Also, if you change diapers light stools are also a sign of BA as without bile flow stools do not have color.  Babies with BA also have trouble gaining weight. 
     Many babies born today with BA have a good chance of survival also because of liver transplants.  We are very fortunate that Kinley is a candidate for a living donor transplant and we have Andrea, a special friend, and Daddy who have both been through testing and could be a living donor for Kinley if necessary.  For some kids, living donor is not an option, and they do not all receive organs in time or by the time they do, they are just too sick to undergo surgery.  Please think about organ donation and sign up or let your family know if you want to be an organ donor.  
     Thank you for listening to me tell our story and you can always check baaware.org for more information. 

I hope you all have a Merry Christmas!!