Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian...
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Transcript of Saving Kobe. “I’m late” “No, I’m late” Denial Home test x 4 (+) – Expired – Ovarian...
Saving Kobe
“I’m late”
“No, I’m late”
Denial
• Home test x 4 (+)– Expired– Ovarian tumor
• New home test (+)• Blood (+)• Ultrasound
• Denial plays a big role
The situation
• Parents over 40• 3 kids (15,14,10)• Busy life
• Reality show
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
Statistics
• There is a 1 in 30 chance the baby will have a chromosomal abnormality
• The baby will have a chromosomal abnormality
The pregnancy
• No problems• Pitting edema– My fault
• Screening tests• Amnio
Kobe James Bixler
4 week check
• Yellow skin?• Yellow eyes?• Yellow tears
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!”
Oh thank God
What the heck is biliary atresia
Assume that the I know nothing about medicine
Even if I am a healthcare professional
Diagnosis
• Hopkins (CHOP)• Traffic • Finding building• Parking• Finding clinic• Waiting room
Please understand that I am stressed out
I might do or say things that I would never otherwise do or say
Neonatal Hepatitis
• Idiopathic hepatitis• Hepatitis A• Hepatitis B• EBV• CMV• Enterovirus
• Alpha-1-antitrypsin deficiency
• Wilson disease• IEM• Cystic Fibrosis• Biliary atresia
Diagnosis
• More labs• HIDA scan• Next week• Your baby is yellow
If there is any chance that something is wrong, please find
out ASAP
Diagnosis
• Phone calls– Ped surgeons– Transplant surgeons
• BA – Kasai procedure• Liver transplant• Practice makes perfect– Shouldice clinic– Kasai procedure
• Go to CHOP
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
Children’s Hospital of Philadelphia
• Called Saturday• Hours • Fellow on call– I’m busy call back later
• ER Sunday morning
My baby is sick and I don’t know why.
Why won’t anybody help me
Children’s Hospital of Philadelphia
• Traffic• Parking• H1N1• 2 hours• ER 8 hours• “your baby is really
yellow”
Help us
• 5 days• 3 hospitals• Severe distress• No diagnosis• Admitted by Peds
resident• Yellow baby
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
Do what ever you can to let the family know that they are being
cared for
Someone help me
“I really dig Hannibal. He had real guts. He rode elephants into
Cartilage”
“I guess I’m going to fade into Bolivia”
“Everybody has a plan until they get hit in the mouth”
If it important enough to test, itis important enough to let me
know the results
NOW
The camp
• Don’t mess with mamma bear
• Studies– labs
• Rounds• Thought• Sleep deprivation• Decision making
Diagnosis weekneonatal hepatitis
• More labs• Ultrasound • HIDA scan– technician
• Liver biopsy– Severe cirrhosis
Biliary atresia
• 1 in 15,000 births• Progressive obliteration
of bile duct system• Cause unknown• Liver failure • Death • Kasai procedure
The surgeon
• Met for 3 min• Surgery plan• Was once a transplant
surgeon• Hung crepe• No Q and A time• Experienced Kasai
surgeon
Dr. Morio Kasai1922-2008
• Pediatric Surgeon• Fellow at CHOP• Dr. C. Everett Koop• Kasai procedure• A chance• A bridge
Kasai results
• Best before 6 weeks• Rule of thirds• 80% liver transplant• Malabsorption• Portal hypertension
Pre-op
• Extreme tension• Surgeon (1 min)• Plan• Cholangiogram• Kasai • Staff
I can hear you.I feel like I’m going to be sick.
I don’t want to hear about your tequila shots
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
This is the most important day of our life.
Please let me know how surgery is going.
Base camp
• Ilius• Cried for days• Mom would not leave• Stress!!!!!!• Eyes cleared• Liver labs improved• Going home
Last night
• 2.5 weeks• Uncertainity• Surgery• Fear, stress,
helplessness• Sleep deprivation• “High K incident”
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
December• Fever• Temp 102• Screaming• Lethargy• Ascending cholangitis
Ascending cholangitis
• Iv abx• Fever gone• Go home• 2 days• $18,000 dollars for
flight
Bounced back
• Fever returned• Liver enzymes high• Ascending cholangitis• ER – same story• Fellow at desk• Ultrasound• PICC line
How are we now?
• 2nd birthday• No cholangitis• Bili normal• Liver enzymes normal• Thriving • 80 % height and weight
Biliary atresia
• Never goes away• Intrahapatic?• Kasai is temporary• Cholangitis• Liver– Portal hypertension– Esophageal varicies– Failure
• Transplant
Domestic Violence Syndrome
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