1. Saving Kobe

2. “I’m late”

3. “No, I’m late”

4. Denial Home test x 4 (+) – Expired – Ovarian tumor New home test (+) Blood (+) Ultrasound Denial plays a big role

5. The situation Parents over 40 3 kids (15,14,10) Busy life Reality show

6. Thoughts How could this happen Finding time for a baby Why is everything my fault Mother’s health Baby’s health – Chromosomal – Down’s syndrome

7. Statistics There is a 1 in 30 chance the baby will have a chromosomal abnormality The baby will have a chromosomal abnormality

8. The pregnancy No problems Pitting edema – My fault Screening tests Amnio

9. Kobe James Bixler

12. 4 week check Yellow skin? Yellow eyes? Yellow tears

13. We have a problem Labs – Total bili 9.5 – Direct bili 5.4 Ultrasound – Liver normal – Spleen normal – GB functioning “He doesn’t have biliary atresia!”

14. Oh thank God What the heck is biliary atresia

15. Assume that the I know nothing about medicine Even if I am a healthcare professional

16. Diagnosis Hopkins (CHOP) Traffic Finding building Parking Finding clinic Waiting room

17. Please understand that I am stressed out I might do or say things that I would never otherwise do or say

18. Neonatal Hepatitis Idiopathic hepatitis Hepatitis A Hepatitis B EBV CMV Enterovirus Alpha-1-antitrypsin deficiency Wilson disease IEM Cystic Fibrosis Biliary atresia

19. Diagnosis More labs HIDA scan Next week Your baby is yellow

20. If there is any chance that something is wrong, please find out ASAP

21. Diagnosis Phone calls – Ped surgeons – Transplant surgeons BA – Kasai procedure Liver transplant Practice makes perfect – Shouldice clinic – Kasai procedure Go to CHOP

22. I want the best for my baby. Please send me to the doctor where you would take your baby. Try not to let outside forces influence your decision

23. Children’s Hospital of Philadelphia Called Saturday Hours Fellow on call – I’m busy call back later ER Sunday morning

24. My baby is sick and I don’t know why. Why won’t anybody help me

25. Children’s Hospital of Philadelphia Traffic Parking H1N1 2 hours ER 8 hours “your baby is really yellow”

26. Help us 5 days 3 hospitals Severe distress No diagnosis Admitted by Peds resident Yellow baby

27. What can you possibly be doing that is so important that you can’t at least pick up the phone and let me know you care

28. Do what ever you can to let the family know that they are being cared for

29. Someone help me

30. “I really dig Hannibal. He had real guts. He rode elephants into Cartilage”

31. “I guess I’m going to fade into Bolivia”

32. “Everybody has a plan until they get hit in the mouth”

33. If it important enough to test, it is important enough to let me know the results NOW

34. The camp Don’t mess with mamma bear Studies – labs Rounds Thought Sleep deprivation Decision making

35. Diagnosis week neonatal hepatitis More labs Ultrasound HIDA scan – technician Liver biopsy – Severe cirrhosis

36. Biliary atresia 1 in 15,000 births Progressive obliteration of bile duct system Cause unknown Liver failure Death Kasai procedure

37. The surgeon Met for 3 min Surgery plan Was once a transplant surgeon Hung crepe No Q and A time Experienced Kasai surgeon

38. Dr. Morio Kasai 1922-2008 Pediatric Surgeon Fellow at CHOP Dr. C. Everett Koop Kasai procedure A chance A bridge

39. Kasai results Best before 6 weeks Rule of thirds 80% liver transplant Malabsorption Portal hypertension

40. Pre-op Extreme tension Surgeon (1 min) Plan Cholangiogram Kasai Staff

41. I can hear you. I feel like I’m going to be sick. I don’t want to hear about your tequila shots

42. Surgical waiting room No word after cholangiogram 3 hours – doing kasai 8 hours – Its done – Liver was a rock – We will see – Gone in a flash

43. This is the most important day of our life. Please let me know how surgery is going.

44. Base camp Ilius Cried for days Mom would not leave Stress!!!!!! Eyes cleared Liver labs improved Going home

45. Last night 2.5 weeks Uncertainity Surgery Fear, stress, helplessness Sleep deprivation “High K incident”

46. This has been very hard for me. Please use common sense and respect me just as I respect you. I am still a momma bear

47. December Fever Temp 102 Screaming Lethargy Ascending cholangitis

48. Iv abx Fever gone Go home 2 days $18,000 dollars for flight

49. Bounced back Fever returned Liver enzymes high Ascending cholangitis ER – same story Fellow at desk Ultrasound PICC line

50. How are we now? 2 nd birthday No cholangitis Bili normal Liver enzymes normal Thriving 80 % height and weight

51. Biliary atresia Never goes away Intrahapatic? Kasai is temporary Cholangitis Liver – Portal hypertension – Esophageal varicies – Failure Transplant

52. Domestic Violence Syndrome

53. Summary No one is perfect Try as hard as you can to be perfect Having a sick kid is no fun Life is never the same Ask these “parent questions” yourself