Landon, born May 31, 2010, completely normal pregancy and 3 weeks early, was a healthy 5 lbs 8oz boy. Two days into our hospital stay they drew the normal bilirubin levels because he was starting to turn jaundiced. This was no suprise to me, as our first son had jaundice very badly and spent 5 extra days in the hospital under the “tanning bed” lights. However, the pediatrician came to talk to me when the results came back. His biliruben levels were elevated, but not significantly… however, the direct levels were elevated as well, which raised alarms (as this number should be around 0). The pediatrician decided to order a liver enzyme panel be done and it showed some abnormal results. He then discharged us from the hospital, reassuring us it was “probably nothing”. The following day I recieved a phone call to readmit him and run more texts. Long story short, his labs continued to be abnormal. Eventually the doctors ruled out biliary atresia and diagnosed my son with Alagille Syndrome. A very rare genetic defect which has a wide range of problems associated. My son (as of now) seems to be a lucky child with only mild liver abnormalities, a heart murmur and the facial characteristics. For now the liver doctors do not think he will need a transplant in the near future. This may change though, because not much is known about the disease. He is doing great now 3 months old, but growing slowly (typical of Alagille). He still weighs less than 10 lbs and is currently on an NG tube to help. His color is good for now and everyone prays for the best for him. Time will tell.


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