Happy Rebirthday Eve

We knew our baby’s heart would be stopped while the surgical team at Children’s Hospital Boston repaired it.  It’s a damn freaky thing.  If your heart isn’t beating, you are…well, dead.  Right?

It occurred to me that we – the families of pediatric heart patients – are rather unique in having experienced this with our kids.  There are certainly alot of horrible diseases and disorders that plague kids, but how many others require the heart to stop beating to get better?

The National Library of Medicine has a rather clinical explanation of what bypass heart surgeries entail, the risks, the preparation and the aftermath.  Sorta glad I didn’t see that page one year ago today as they carried my baby into the OR.

http://www.nlm.nih.gov/medlineplus/ency/article/007363.htm

More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.

That means a whole lot of people, with increasingly successful heart surgeries will get to celebrate rebirthdays.  Eve’s surgeon, Dr. del Nido introduced us to this phrase.  In essence, when her heart started beating again at 12:40 on April 13, 2009 – she was re-born.

So at the Saarinen house, we get to celebrate December 12 AND April 13 every year. In fairness, we are letting our other kids celebrate two special days each year as well.

I’ve decided my second celebration day is April 23.  It’s the day we got to bring Eve home.  It’s also the day I found out we were pregnant with her.

Both seem like excellent reasons to party.

As if we didn’t have enough to give thanks for, we learned this week that a local medical device company completed a prototype of what we hope will be the first FDA-approved pediatric heart valve brought to market in the US.  That happened within 8 short months of the first conversations about it last summer.

And the newborn screening pilot program in Minnesota has had a ripple effect in other communities and states as hospitals have started implementing pulse oximetry screening even in advance of the official recommendation for universal screening that we intend to see from Health and Human Services before the end of this year.

Somehow Eve has rallied an amazing roster of medical professionals and public policy leaders around common sense initiatives that help families coping with the world’s most common birth defect, affecting 1in100 newborns. CHDs are responsible for one third of all birth defect-related deaths. And 20 percent of CHD children who make it through birth will not survive past their first birthday.  Those are mind-boggling statistics.  There are good people adding to their plates every day to change these numbers.

This isn’t easy stuff.  And we never thought we’d be living it.  But for now, all I can hope for is that every rebirthday Eve celebrates brings with it a sense of repurpose, recommitment, and renewal.  We’re in.