Tag Archives: SVT
Health information sharing.

Health information sharing.

Last week’s study published in the New England Journal of Medicine proclaiming patients taking azithromycin (Z-Pack) had an increased risk of cardiovascular death gave me goosebumps.  Again.  Not because I have a father with heart disease and 2 replaced valves.  Not because I have a 3-year-old daughter with Congenital Heart Disease.  But because it reminded me, yet again, that relevant health information is rarely collated into one place and shared effectively to protect the patient.

When my daughter, Eve, was not yet one month old, we were given “training” on how/when to administer our baby’s cocktail of 8 medications. These were the drugs that were keeping her heart beating. Period. No pressure.  Among the 8 meds, was a drug called Digoxin.  It’s a widely used medication for heart conditions – in adults and children – and essentially improves the pumping function of the heart.  But it is also technically incompatible with certain types of heart arrhythmia, and particularly with electrical pathway issues.

If not for a diligent pharmacist, we may have been sent home with a baby with CHD and an undiagnosed case of Wolf-Parkinson-White Syndrome.  Wolff-Parkinson-White syndrome is a heart condition in which there is an extra electrical pathway (circuit) in the heart. The condition can lead to very rapid heart rate, called supraventricular tachycardia (SVT).  In our daughter’s case, it was 250-300 beats per minute.  “Like a hummingbird” our pediatric cardiologist used to say.  Question is: why wasn’t this immediately apparent to every one Eve’s care team?  Why did we just get lucky?

This nearly-adverse event because one of the core elements of change I was committed to working on in health IT. The infrastructure is there. The capacity is there. The need is there. Why can’t these systems just TALK to each other??  My mom used to call it the “knitting circle”…in our small hometown, everybody knew everything.  In real time. 30 years ago.

The new report on Zithromax (or Z-Pack as it’s fondly known) was just another of a thousand case examples where health IT should be solving a problem.

In full disclosure, I love the Z-Pack.  We’re fortunate in that our kids don’t get infections often, but when they do, the other stuff just never works.  Z-Pack does.  And it’s a short course.  Easier to take, easier to complete.  I can think of one instance where all three of the children had nasty cases of some upper respiratory infection.  The pediatrician prescribed Z-Packs.  It was smooth sailing for our older two, but Eve (then 20 months) would not touch it.  We could not get a drop into her, without being charged with some sort of child abuse.  We let it go.  It took her longer to recover, but eventually she did.

Clearly our pediatrician is aware of Eve’s heart condition.  But would she have been aware of the potential issues with azithromycin relative to heart arrhythmias and accessory pathways?  Apparently, there has been an awesome little tool our there for years to help electrophysiologists make antibiotic choices in patients with Long QT syndrome or in those who take other antiarrhythmic drugs.  There’s even the Arizona CERT QTDrugs.org website. But primary care physicians having unfettered access to details that specialists may have at the top of their newsfeed? Well, that’s just not reality. Most of us just hope that an integrated care team is reality.

But those of us who BELIEVE in the power of health IT understand it DOES reduce disparities and improve outcomes. It allows that team, however loosely structured, to actually communicate, exchange health information and share critical data.  It reduces the risk of the wrong prescription. The the wrong diagnosis. The wrong care management.  It’s not just a virtual “red flag” – it’s the knitting circle that both care providers and patients desperately need.

Eve’s story 2.0

Eve’s story 2.0

Today in 2009, we were far from Minnesota – in Boston.  Eve underwent surgery to ablate an electrical pathway responsible for rampant episodes of SVT (supraventricular tachycardia).  Diagnosed with Wolff-Parkinson-White syndrome a week after birth, these episodes of 280+ beats per minute were wreaking havoc on her already fragile heart.  Any repair to her defective and damages mitral valve would be in jeopardy without taking care of the SVT first.  It was successful.  Few hospitals in the country have EPs that will do infant ablations – only 3 actually at that time, perhaps a few more now.  We are confident this helped save Eve’s life and give her a fighting shot at a lasting heart repair.  She looked like hell afterward.  But in context – we were just so grateful the procedure was a success.  We settled in for the night, looking forward to meeting Dr. del Nido the next day in preparation for her next surgery – in 4 days.  Eve would turn 4 months old, the day before her open heart surgery.

More about SVT: http://ow.ly/4x8hn

Children’s Hospital Boston Cardiology: http://ow.ly/4x8hV

The unforgettable ride.

The unforgettable ride.

Two years ago this week, our 9 week old daughter Eve was lying peacefully on our bed.  It was one of those rare, but happy weeks when she was home from the hospital.  Her mitral valve leak was “moderate” when we were discharged….down from “severe” during those first few weeks.  We were just so desperate to bring our new baby home….relatively speaking, we were very, very new on our CHD journey.  I was going to start changing her, when my husband and I thought she was breathing a little heavy.  As had become our routine, we grabbed the stethoscope to check her heart rate.  No need to start the stop watch.  It took only a couple seconds to know she was in SVT – Supraventricular Tachycardia. During episodes of SVT, the heart’s electrical system doesn’t work right. In her case, her heart rate would soar up to 280 beats per minute.  Most episodes of SVT are caused by faulty electrical connections in the heart.  In Eve’s case, in addition to her mitral valve defects, she had Wolff-Parkinson-White syndrome – and that was causing her chronic SVT, happening 20 times a day at its worst. We had learned in the hospital what “tricks” could be used to help pull her out of these heart-racing episodes.  Pushing her knees up to her chest, ice across her eyes and nose area.  These would usually work, although in her early hospital bouts with SVT, she was almost always given the drug adenosine which ran right into her line – a straight shot to jolt the heart back into rhythm.  We had seen SVT often enough that we were quite calm about it.  Even when we couldn’t get her heart rate to come back down, we calmly got our coats and shoes on, grabbed a bag and headed for the hospital.

It was about 10 minutes into that 20 minute drive.  Even though it was dark in the van, I could tell her skin had changed color.  She stopped moving.  I put my hands on her couldn’t feel her breathing in her carseat.  I started to panic….telling my husband to drive faster.  I unbuckled her and held her in my arms – in a car going 80 mph down the frozen highway.  If she was going to die, I was going to be HOLDING her, not WATCHING her strapped in a carseat.  I prayed.  Hard.  Just let her be OK.  PLEASE…I will do anything. Quietly, I started whispering that mommy was there and everything was going to be OK.  I said “I’m sorry”….over and over.

Once we got to the ER, the docs started working on her.  They tried the ice.  No.  Then they tried putting her whole head and upper body into a big tub filled with water and ice.  No.  Then again.  Still 260 bpm.  Then they started trying to get a line in her to do the adenosine.   She was always, always horrible to get a line in.  Tiny veins…most of which had been annihilated by all the IVs and PIC lines during her ICU stays.  They handed her to me with a towel, she was freezing cold and limp…and I started whispering again.  This time: “Mommy’s still here.  It’s not time to leave.  Slow your heart down and come back home with us.”  I started reciting “Brown Bear, Brown Bear” in her ear…her favorite.  I can picture all of this like it happened yesterday.  After about 30 seconds, like magic, we watched the heart rate monitor pop back down to 130.

We actually ended up going home that morning.  She started to get her color and vitality back – and docs didn’t think we needed to stay since we were scheduled for our cardiology appointment 2 days later.  It was at that appointment we found out that Eve’s heart had plummeted back to a 4+ leak and was summarily admitted to the ICU for an extended hospital stay.  She was in heart failure.  During the following 7 weeks, she would be home with us a total of 9 days, including the few days leading up to her trip to Children’s Boston for her ablation and open heart surgery.

Since we had to stay strong for Eve and our other children, I’m not sure Paul and I ever truly absorbed what happened that night – or really much else leading up to and through her surgeries.  It’s survival mode.  Heart families everywhere get that.

But this past weekend, when I looked at the calendar and realized it was the 2nd anniversary of Eve’s christening – and approaching two years since that horrific car ride to the hospital – I had another meltdown.  I prayed that we would never experience that fear again. I prayed others who know this fear may have peace in their journeys.  And I prayed that we never forget the debt we owe.

Eve’s life – and the talents of her medical teams have given us the unique opportunity to know more and do more.  It is because of her that 1in100.org and Facebook.com/1in100 were founded. She has even helped ensure that soon every newborn in this country will be screened for heart defects before leaving the hospital.  We are profoundly grateful…

All About Eve…

All About Eve…

On this day last year, I finally was able to talk about Eve.  I sent my first message to friends and co-workers since Eve’s delivery on December 12, 2008.

“Sorry to have missed you all over the holidays….and that it has taken me a while to write this email.

Eve Isley Saarinen was born the evening of Friday, the 12th  – 6 lbs, 9 oz, 20 inches….and lots of beautiful dark hair.

At 2 days old, Eve was diagnosed with congenital heart disease. It’s a broad category.  Her biggest problem is a severely leaking mitral valve, which puts strain on the whole heart function, enlarging the heart and putting pressure and excess fluid on the respiratory system.  She was transported by Lifelink to the University of Minnesota NICU on the 14th.  Paul drove through the blizzard that night to be at her side, but since I had a c-section I could not be discharged until the next day.  Took a cab over there on the 15th and we hunkered down for the next 5 days.  The medications seemed to be working at first, but within a couple days her heart was continuing to get larger, her breathing more labored.  After an episode of SVT – which is basically super-fast heart arrhythmia, she was immediately transported to the U of M Children’s Hospital pediatric intensive care unit – closer to the full time cardiology staff and cardiac surgeon.

She was immediately started on a new, stronger drug to alleviate some of the pressure and workload on her heart.  We were warned that her situation was precarious.  The surgeon and team spoke to us of a possible transplant (her heart had already been greatly damaged by her defect and the tachycardia).  Yet with all this, she has started to turn a corner and improve.

With only a couple setbacks, Eve has been getting stronger every day.  It is slow progress – and it’s hard to be patient.   We don’t know how long we’ll be here as the medicines do their work…though they seem to be stabilizing her.

The tentative plan is to get her bigger and stronger for a heart surgery at about 3 months old.

There are very sick children all around us here.  It’s the holiday season and there shouldn’t be any sick children.  Anywhere.  So we pray for all these babies and continue to be grateful for how well Eve has been doing.

Blessings to all of you in the new year – cherish your new arrivals.  They are the greatest gifts.  We’ll do our best to keep you posted (Paul’s Eve blog updates can be found at:  www.tweetandmeet.com)

Annamarie, Paul, Jack, Elle and baby Eve”

I can tell you writing about this today – as I try to finally get the 1in100.org website up and running – nearly brought me to my knees.  Those days were a fog.  A never-ending series of rounds, drugs, dozens of nurses, sleeping on floors, praying and praying some more.  We wouldn’t see our other children for days on end, for fear of what might happen if we left Eve’s side.

None of this is news to heart families.  They’ve seen it.  Lived it.  And then some.

The blessing of Eve is her journey.  I can honestly say that I would not be doing any of this if we’d lost her.  The pain would be too intense.

But today – one year after Santa actually cried at her bedside – we are mobilizing.  We give thanks for our gifts and will never, never forget that each day thousands of families are living it.  It is with the greatest honor to those comrades in arms that I make my first official 1in100 post.  Know more.  Do more.  #1in100.