How My Son Got A New Liver: Diagnosis (Part 1)

April is National Donate Life Month and Bunny, Pip, and I want you to be very aware because without organ donation and transplant, Pip wouldn't be with us today.

More than 115,000 men, women, and children need life-saving organ transplants right now and every 10 minutes, another name is added to the list. An average of 18 people die each day waiting for organs.

This month, I'm gonna tell Pip's story - a little bit every day. We need to improve these statistics. Learning more and talking more and sharing more is the first step.

Pip's Diagnosis (Part 1)

After Pip was born on June 26th at 12:15am, I enjoyed my time in the hospital.  The brand new Prentice Women’s Hospital had private rooms with nice city views and room service.  I hung out with little Pip and let people wait on me for two days.  Unlike with our first, about whom I felt tremendous guilt if I let her out of my sight, I felt perfectly fine allowing them to take the boy away and wrap him in warm blankets and bounce him up and down so that I could sleep.  I would’ve moved in if they’d let me.

The pediatricians would visit every day and they both said the same thing: 50% of newborns have jaundice.  It’s totally normal.  It’ll go away in the next few weeks.  Don’t worry.

I wasn’t worried.  Not at all.

With the first one, you haul them into the office for every little thing.  Bunny was brought in once because I thought she had an odd film over one eye if you looked at her at a certain angle in a certain light.  She didn’t.  She was brought in for colic and for weigh-ins because she was on the skinny side.

With the second one, you’re a lot more likely to say “Eh.  That looks like a flesh wound.  When the bleeding stops, I’ll duct tape it.”

I had absolutely no concern about his jaundice.

He completed us – just like in Jerry McGuire.  I had always known I wanted two children.  He showed up, he was healthy and gorgeous, he was a good eater and a good sleeper, he was quite handsome and smelled wonderful.  He was calm and willing to be dragged around to playdates and dance lessons as is a second baby’s lot in life.  He was perfect.  We were perfect.

In hindsight, there were clues that something was wrong.  His poop looked different than Bunny’s poop had looked.  It wasn’t bloody or black.  It was just different.  A little lighter – a different texture. But everybody's different, right? (shrug) His urine was very dark but that's normal for a baby with jaundice.  I did notice once, while changing him, that the sides of his stomach stuck out in an odd way.  Kinda like a puppy lying on its back - his hips were very narrow and then his tummy rounded way out to the sides and then his chest was thin again.  You know how puppies look like that?  Bunny’s tummy hadn’t looked like that.  But, then, she was quite a skinny little thing.  And, you know, we’re all built differently. (double shrug)

We took a trip to a state park when Pip was about 6-weeks-old or so and, when we came back, the neighbors commented that he had gotten some sun.   Yeah, right, I was sunning my newborn.  I protested but they insisted that he had a tan.

To us, that was just what he looked like.  He looked a little Mediterranean.  He had olive undertones.  Lots of people do, right?  Never mind that both his parents are pale like Casper and of British and Irish descent.  You kinda see what you wanna see.

At his two month well-baby visit, his pediatrician said he was the picture of health.  We were both very pleased.  As she was leaving the room, she said “Do you have any questions or concerns for me?”  I always feel so much pressure when that question is asked of me.  I always feel like a good mother would have some kind of question or concern.  I said, “Only that he still looks a little jaundiced.”

That was the moment we hopped on the roller coaster.

Our pediatrician didn’t feel terribly concerned but she decided we should take him to get a blood test just to make everyone feel better.

Bunny and I took him the next morning, Wednesday, to get bloodwork done.  They poked his tiny arm while I held him still and he cried and I felt terrible.  The first of 100’s upon 100’s of times that would happen.  We were told that we would hear from them on Thursday if something was wrong and on Friday if everything was fine.  I still was only mildly concerned.

Thursday came and went and we received no call.  At the end of the day, my husband and I hugged and breathed a sigh of relief.  He was fine – just like I knew he was – and we’d be hearing from them the next day that he was perfectly fine and we shouldn’t worry and the jaundice will resolve itself and world peace will be achieved and we should probably play the lottery because we were the luckiest folks EVER.

We heard nothing on Friday, either.  I shrugged it off.  He was so totally healthy - it was low on their list of priorities.  My husband was a little concerned.  He felt that it was more indicative of a possible human error and that it was more likely that the results had been lost or overlooked than marked as low priority.  He asked me to call on Saturday morning and request the results.

I called on our way to the zoo.  We spent a beautiful morning at the very last Farmer’s Market of the season in the big field across from the Lincoln Park Zoo.  It was a perfect day – warm with a cool breeze.  There was a guitar player doing Beatles and Simon and Garfunkle covers.  We had a picnic and fresh fruit and ice cream.  Bunny was dressed in a fairy costume and she flitted about and danced in the grass.  Pip was perfectly happy to lay around on the blanket and stare up at the dappled light streaming through the leaves.  I stepped outside myself and thought about how perfect it all was.  A happy family in a happy place with nowhere to be.  Sigh…. Lovely.

We walked over to the zoo and Bunny and her dad decided to take a ride on a swan boat (remember those?)  They got all life-vested up, I took pictures, I watched them paddle away, I looked down at Pip sleeping peacefully in the baby bjorn on my chest and then I checked the time on my phone.  What I found was four missed calls – 4 messages.  On a Saturday.  Unheard of.

I found a quiet-ish spot and tried to listen to the messages.  It was a doctor from our pediatrician’s practice whom I had never met.  She said she was holding Pip’s blood test results and needed to talk to me.  She said to call as soon as I received the message – that she was skipping lunch and waiting by the phone.  That right there is enough to make your blood run cold.  I looked up in the direction my husband had paddled off in and could see him paddling frantically back toward me.  He was waving his phone in the air. They had contacted him, too.

It took a while to reach the pediatrician.  At lunch time, an answering service generally answers.  "There’s a doctor waiting to talk to me,"  I said.  "I need to be put through."  The answering service guy was skeptical.

The doctor said that the blood test had revealed that Pip’s unconjugated bilirubin was 4.5.  She either said that or “Bloddy bloddy floopie doop” because, you know, same diff to me.  I said “OK…well…what SHOULD it be?”  She said “Well...it should be zero.  None. Something is wrong.”

Here is a basic science lesson as I understand it – it may or may not be accurate due to my lack of abilities in science.
Most babies who have newborn jaundice have it because after a baby is born, lots of their red blood cells die.  Not a big deal – there’s just a bunch of extras in there and they die off quickly.  When they die, they release indirect (conjugated) bilirubin into the bloodstream.  It is orange in color and the baby turns yellow.
Rarely, the bilirubin in the blood is direct (unconjugated) bilirubin.  That is from bile backing up into the bloodstream.  It means that something is blocking the bile ducts and keeping the bile from going out into the gall bladder.  It isn’t a good thing.  End science lesson.

This pediatrician I didn’t know said that there were two nurses working through lunch on Pip's behalf - setting up appointments at Children's Memorial Hospital for more blood work, an ultrasound, and an appointment with a Hepatologist for Tuesday.  No one asked if we were available that day.  No one asked what time would be convenient.  It wasn’t that type of situation.  She asked if we would like to come in and speak to her about what direct bilirubin in the bloodstream could mean.  We said yes, slammed Bunny into a stroller, and ran to the car.

She was very calm.  She said that our worst case scenario would be biliary atresia which she described as a blockage of the main bile duct that would have to be surgically removed.   So we left with the understanding that our worst case scenario would be a blockage that could be fixed.  One surgery.  Fixed.  No one wants their baby to have to go under the knife.  He was so sweet and tiny.  But I had the weekend to wrap my mind around this sudden jostling of our perfect picture and I became zen with it.  After all, I thought, it could be so much worse.

Indeed.  It could.

Tomorrow - Pip's Diagnosis (Part 2)
To learn more about organ donation and to make sure you're on the registry for your state, visit www.donatelife.net

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