Tuesday, August 8, 2017

Baby Beth - Diagnosed


The ultrasound screen flickered to life.  This was my next to last bi-weekly appointment.  One more milestone, practically in my rear view mirror.

Dr. Silver was taking his time with the measurements today.

"Her head looks big."

Great.  At least I was already planning on the epidural.  I might as well turn in my crunchy hippy, natural childbirth card.  A few weeks before Elle was born, I was miserable with a terrible cough.  At an appointment much like this one, Dr. Silver heard me coughing from out in the hall.  He stuck his head in the door and offered to prescribe me an antibiotic.

"Oh no, it's just a cold.  I don't want an antibiotic.  I'll get over it on my own."

He shrugged and walked out.

Guess who coughed herself silly through an un-medicated labor of a 9 lb baby?

It sure wasn't the woman in the next room.

After a traumatic delivery, I had a hard time recovering and eventually decided maybe I needed antibiotics after all.  The cough instantly went away.


I guess sometimes the doctors actually do know something.

That's why when Dr. Silver suggested that Ana be delivered a week early, and that I go ahead with the dreaded epidural, I acquiesced.  Not without great mental effort and gnashing of teeth.  But it was part of the healing process.  Learning to trust and not lean on my own understanding.  And everything turned out great.

A few weeks before this particular appointment, Dr. Silver had a frank conversation about my delivery options.  He was uncharacteristically uncomfortable with my plan to deliver at St Francis South.  I have always given birth there.  It's a small ancillary hospital in the larger St Francis system.  You can park right outside the front door.  The nurses are friendly and unhurried.  It's as close to home as you are going to get and still be in a hospital.  I couldn't understand his hesitation.  He made it clear that it was my choice and he would still be glad to deliver at the smaller location.  But "just in case" something weird happened, he would prefer to be at the region's largest and best facility.

I took a deep breath, and agreed to switch locations.  Maybe God was giving him a nudge.  I was going to listen this time.

So, Miss Beth has a large head. She's on track to be 9 lbs.  So far this was a pretty routine scan.  The doctor paused and took a closer look at the screen.

"I don't know what this is.  I've not seen this before."

I craned my neck to the right as he swiveled the screen towards me.  It very clearly looked like a hole in the center of my little girl's brain.

"This dark spot might be fluid.  Here, let's switch views.  There's blood flow-hmm."  He abruptly toggled away from the image and hastily scanned the rest of her body.

"I really have no idea what this. But I'm going to show this to my partner, Meagan.  It might not be anything, but it certainly was not what I was expecting to see.  Don't worry and don't Google!  We might want you to see a high risk doctor.  But don't worry!"

And he was gone.

As I left the exam room, I could see him studying the image on his computer.

"See you later, Doc.  Don't worry about me worrying because I'm not going to worry!"

Uh, yeah.  I was worried. 

As soon as I reached my car I called Robert and told him the little that I knew.  Then I hastened home for a good old fashioned Google search.  The one thing that stuck in my mind was fluid.  Water on the brain.  Hydrocephalus. 

The Google results were mixed.  It can be a big deal.  It might be minor.  Lots of people have it.  It can accompany Down's Syndrome.  And then I found the documentary made by TLC: "My Child's Head Won't Stop Growing!"


This was the first inkling Robert and I had of what might lie ahead.  We waited the weekend out, rather impatiently.  Rather than waiting for the MFM office to call us, we called the Maternal Fetal specialist ourselves on Monday.  The nurse said that the Doctor Himself had our file on his desk and would determine how quickly he wanted to see us.  Well!  We called Dr. Silver's office for help.  The nurses sounded worried and pledged to pester the specialist until we got our appointment.  We got a call the next day: Thursday at 7:30 - Be there.  You can bet we were!

This ultrasound tech was professionally uncommunicative as she did the scan.  She was happy to converse and make small talk.  She would tell us which body part she was looking at.  But not a clue as to what it all meant.  Robert and I did our best to be relaxed and keep the mood light.  She would banter back.  But at the end of the scan she casually remarked that sometimes her job was difficult.  She saw a lot of sad diagnoses.  It broke her heart to know that often the parents were going to receive devastating news.  But there was no time for me to ponder that and whether she was giving us a hint.  It was time to meet the doctor.

Dr. Smith began with an apology.  "I misread the report sent in from your OB.  I thought you were here for a maternal AVM.  I see now that this is a fetal AVM.  I've done some research last minute and I will have some pages copied off for you."

Robert and I looked at each other in bewilderment.  What in the world was an AVM?  What did it have to do with hydrocephalus?

"So, this spot on the brain, it's not filled with fluid?"

"No, it's blood.  This is a fetal arteriovenous malformation.  The arteries deliver blood at high pressure from the heart.  This high pressure blood flow is supposed to be diffused to the surrounding tissue through a system of capillaries.  Veins should join the capillaries to take the lower pressure blood back to the heart.  In this malformation, there are no capillaries.  Arteries are joined to the veins, creating a mass of tangled connections and high pressure blood flow through veins that are not designed for that.  This has caused an aneurysm, or ballooning in the veins.  The blood rushes back down to the heart too forcefully.  Because the brain is not getting properly oxygenated, the Co2 sensors signal the heart to beat harder and faster.  This is a vicious cycle that fatigues the heart and can eventually lead to heart failure.  The aneurysm can rupture, which would be fatal.  You are going to need a c-section.  We can't risk the pressure on her head in a vaginal delivery.  Honestly, I've only seen this once in my thirty years of practice.  Your baby is going to need a pediatric neurosurgeon.  The only one here in Tulsa left last month.  There is one in Oklahoma City, but I recommend you travel down to Houston.  They have the best doctors in the region there.  I know a few of them personally.  This is where these cases are usually sent."

Robert and I just sat there, trying to wrap our minds around the swirl of new words, new thoughts, new risks, new options.  Nothing really made sense.  I had somehow neglected to bring my purple notebook where I write down everything that is important.  I fished out a business card and a pen and hand them to Robert.  He tried taking abbreviated notes on the back of it.  AVM.  Aneurysm.  Houston.

"Oh, and one other thing.  There is a small hole in the baby's heart.  It can be a marker of Down's.  You can get a blood test today to find out if that is the case."

Really, Down's was the least of our worries at present.  Our entire world had just been turned upside down.

Dazed and confused, we walked out of the building holding hands.  We would go get the blood test, then grab some breakfast and talk about what had just happened.

The waitress gushed over us.  "Aw, your baby belly is so cute!  You look just radiant!  Boy or girl?  When are you due?  Is this your first?  Six!  My goodness!  Are you going to stop after this one?"

I fielded the questions as best I could.  But my head was in a whirl.  When would she be born?  Where would she be born?  I looked down at the papers from the doctor.  This wasn't Dr. Google.  These were photocopied pages from his personal encyclopedia.  It said things like: "if the fetus survives to birth".  I looked up at the pictures covering the wall of the cafe.  There was one of a little girl releasing a heart shaped balloon.  I remembered myself as a little girl, releasing red balloons at the NICU reunion picnic with my little brother.  Balloons of hope, balloons of remembrance.  Which one was this little girl setting free?  Was I going to have to let my little girl go?

Dr. Smith had promised to look into both OKC and Houston medical centers.  We expected a phone call sometime on Monday.  We had a followup appointment scheduled with him for a week later, on Thursday.  The very next day, my phone rang.  It was Dr. Smith.

"I have you all set up in Houston.  The coordinating nurse will be contacting you.  Good bye and good luck."

I set the phone down in my cup holder with a sigh.  I wasn't sure what the future held.  But right now I needed to finish running my errands.  An hour later Robert called. 

"I just spoke with our nurse in Houston, Debbie.  She said for us to come right down and they will get us in on Monday."

"So, we'll see the doctor on Monday?"

"No.  We're having the baby on Monday."