Tag Archives: Eve
How Cinderella made a grown woman cry…

How Cinderella made a grown woman cry…

Some of you know the Saarinen’s took our first vacation as a family of 5 last week.  It was an Orlando extravaganza.  The whole Disney thing.  I know our babies won’t remember a blessed thing.  And our teenager is probably outgrown it, but we were all onboard with it.

Our first full day was slated for the Magic Kingdom.  It was gorgeous.  75 and sunny.  Coming from Minnesota, you don’t realize how tropical that really feels until you are in it.  We ventured into the park with our “We’re Celebrating” buttons.  We hit the castle just in time for a musical number with all the big-time Disney characters.  Mickey, Minney, Goofey, Princesses, Buzz Lightyear…all of em.  We were strolling the two little ones up for a closer look and out of nowhere, I start bawling.  Like serious breakdown.  I kneel down next to Elle, our 2 year old…partly to avoid too many stares.

The enormity of the past year, I think, just hit me at that single moment.  I realized that if we had lost Eve that I could never be standing there feeling the joy of being in such a wonderful place with all of my children.  Something would have been forever missing.  With this, instantly comes the thought of all the families we have come to know (and many we don’t know, but realize exist) that HAVE lost their children to killer heart defects and heart disease.  Many of them have other children – and must TRY to go on and have family vacations and such, right?  But how could you look up at Cinderella and not think of the child who wasn’t there to be part of it??

I have no doubt that the tears that day were indeed tears of joy.  Complete, overwhelming joy.  My husband and I were able to afford a real vacation with all three of our children in tow…to this very magical place.  We were happy.  And we were healthy.  And that is something I will never have enough gratitude for.  Cinderella, you made me cry.  And I think I needed that.  Thank you.

Ups. And Downs.

Ups. And Downs.

Our heart community took some major hits this week…we lost some very, very precious babies here on earth.  But the angels in heaven gained some new playmates.  I think many of us take the greatest solace in the messages from those parents who have already experienced loss.  Levi Beers (Aiden’s dad) never fails to put the faith back in one’s soul. http://mysonisanangel.wordpress.com/   I am grateful for his counsel and friendship.

And there are so many more…Cora’s mom, Kaia’s mom, James’ mom, Allie’s mom…

Despite their still-fresh grief, they reach out to CHD families and GIVE.  I saw a post from Stephanie, Kaia’s mom, that said she would be sure to have Kaia look for Hazel and Pierce in heaven…show them around, ya know.  Just that visual image provided such comfort and peace.  I have yet to see anything more tragic than a coffin the size of a shoe box.  It’s wrong in every way.  But hearing the hope directly from these parents…that is pure light.

And in the middle of all the darkness this week – there has actually been a good deal of light.

There were two things that I started working on last summer – after Eve’s surgery.  Newborn screening for heart defects.  And pediatric heart devices for surgeons.

Those two things became the cornerstone priorities of 1in100.  There is clearly so much to do in the wide world of CHD.  But for the moment, these were the things I truly thought weren’t getting enough traction.  And that I might have some of the tools to tackle.

So this week – strangely enough, BOTH of these priorities saw major breakthroughs.

1in100 Priority 1 – Newborn Screening/Early Detection

This coming week, for the first time in memory, there will be an official report on the agenda at the national Newborn Screening Advisory Committee meeting in Washington DC.  It will be presented by the Mayo Clinic doctor that is on the Minnesota committee and that has been advising on our pulse ox pilot study here.  I will be providing comments at this meeting – and the next step is to submit the formal nomination to make universal screening for CHD at “standard of care” for all newborns.   Anticipating this will happen as soon as February.

On a related note, there are at least two CHD screening bills at the state level that have been introduced in recent weeks.  Cora’s Law and Chloe’s Law are both making headway.  Kudos to Kristine http://instructionsarenotincluded.blogspot.com/ and Kelly http://chdbabies.blogspot.com/ for their passion and drive.

1in100 Priority 2 – Pediatric Heart Devices

Six months ago I made the rounds with heart device companies to find out why it’s so damn hard to get pediatric size devices into the hands of surgeons operating on tiny hearts.  Some reasons? FDA restrictions, small market, too much R&D, too long…been keeping at it regardless, even provided testimony at an FDA workshop in the fall.  Fast forward: Email from a major heart valve company. As of this week, they are working to develop a pediatric heart valve!!  Everyone (FDA, Industry and Physicians) have now made commitments to the speedy clinical study and introduction of pediatric valves with proven safety to the market.

Stunned and grateful.  I could have never imagined so many good people would mobilize, so quickly, to move these initiatives forward in such a meaningful way.