13 June 2010

tiny, scary numbers & a bit about hope

According to some figures, approximately 1 out of every 100 babies (or 1%) born in the United States has some type of congenital heart defect, ranging from the mild to the severe.

Of those 1% of babies born with some type of heart defect, about 1% are born with the combination of four heart defects that Ewan has known as Tetralogy of Fallot. That's 1% of 1%, or about 1 in 10,000 (or, 0.01%). If 5 million babies are born in the United States in a given year, that translates to roughly 500 babies born per year with this particular set of defects.

The prognosis for babies born with Tetralogy of Fallot is promising, with about 90% of those treated surgically going on to live lives that could largely be categorized as "healthy" and "normal".  For some of these children, there may be certain limitations in terms of physical activity.

This means about 10% don't make it. One in ten never come home.

I know that's a number I shouldn't dwell on. 90% is a hopeful figure. When some people hear the 90% figure, they will say things like: That's great! So he will be born, they'll patch him right up, you'll wait a few weeks, and then you can take him home. I know statements like these aren't meant to oversimplify what we're going through, or what we will be going through. Those who make statements like these have said as much.

But here's what I know: we're already overwhelmingly in the minority. Ewan stood a 0.01% chance of having this particular heart defect. That means he stood a 99.99% chance of not having it, and a 99% chance of not having any heart defect at all. In other words, his chances of not having this rare defect at all are greater than his chances of making it through the treatments that will be required if he is going to live. And we already know: he has it.

And while I understand that statistically, the chances of any baby having this defect are extremely rare, carrying this beautiful baby boy who has this rare and scary heart defect represents exactly 100% of my experience with being pregnant. If I spend too much time with this figure, it terrifies me.

Those are all scary numbers. I've spent some time with them, viewing them from a variety of angles and from varying lengths: from a distance, under a microscope, from the bottom of a glass. And while some numbers offer something faintly resembling hope, none of them offer any certainty.

But here's the thing: we absolutely must err on the side of hope, and in a way that has nothing to do with these numbers. This experience will, perhaps, be the ultimate test of ruthless trust in God that we have ever had to exercise. Anything is possible. Hundreds of people are praying. We can be cognizant of the numbers without dwelling on them or placing our hope in them.

We are already pulling together a top-notch support team. We're very near a facility that employs doctors and surgeons who are compassionate and highly skilled. While these things are good and while I dare not stop doing those things I can do, while I do not dare stop surrounding ourselves with the right people (understanding that God gives us these people for a reason), our hope doesn't ultimately lie there either. We will go completely wrong if we dare to presume that any of this lies within human control.

Our hope rests ultimately with God the Father, who is merciful, good, and loving. He hears our prayers and has compassion on us. His love for this child far exceeds the love that we have for him. We ask Him now for the gift of trusting Him, because that's something we are not able to do on our own. In and of ourselves, we cannot handle this. That is certain. But what is also certain is that we know Who can. He WILL prove Himself faithful.

This is not ignorance, it is not turning a blind eye, nor is it some pie-in-the-sky Pollyanna-ism. This is not crossing our fingers, shutting off our brains, closing our eyes, and hoping for the best.

This is the faith to which we are called, the same faith exercised by the ancients who, standing face to face with the impossible, dared to believe God and His promises.

* * *

"Often trust begins on the far side of despair. When all human resources are exhausted, when the craving for reassurances is stifled, when we forgo control, when we cease trying to manipulate God and demystify Mystery, then -- at our wits' end -- trust happens within us, and the untainted cry, 'Abba, into your hands I commend my spirit,' surges from the heart."

Brennan Manning, Ruthless Trust


Jodi said...

Oh Kirsten... I love hearing the way that you process this situation with such honesty, but also hope. It's a privilege to hear you be so real. Ten percent does not seem like a number to be trivialized... I'm trying to put myself in your shoes, and can scarcely imagine how scary that number must be. I agree with you though that it is simultaneously quite promising.

I affirm your belief that God is so much bigger than numbers. With my niece's recent accident still being very fresh, I stand in awe of how big God is. He blew Joy's percent chance of survival out of the water, and the numbers were tiny.

I am believing a wonderful future for you and James and precious Ewan! And I will be faithful to pray as you walk this road. Many blessings to you, mama.

HennHouse said...


Having stood on that faith to which we are called with my own medically fragile child, I can tell you with certainty that FAITH in God and His promises is better than the alternative... In EVERY situation I've ever been in.

Love you.

kirsten said...

Thank you so much. I always second guess myself: Am I being hopeful, or just naive? Am I being realistic, or doom-and-gloom? ... and so on.

And you're right: ten percent is not a number to be trivialized. Though it is encouraging to hear about your cousin Joy -- that her odds were so slim, and she still came out exceeding expectations.

Thanks for believing and praying with us, and for having the faith that this will all turn out well.

I felt like you just gave me a great big hug. You've been there, and done that, and you've done so both with honesty and with grace. I need to remember what you said: that FAITH in God and His promises is better than the alternative.

Amen, and amen.

Judy Sombar said...

I felt I must say this....I hope it doesn't ring inappropriate.

The ruthless faith you are speaking of-Kirsten, my sweet friend, you are holding it already. Do you know that? Honoring the sanctity of Ewan's life, despite your legal right to eliminate his hope, is in and of itself, an act of faith. It is saying to the world, to Ewan, to God, that as long as there is life-there is hope, and we are choosing to allow the uterus which is nourishing Ewan, to do its work, as God has planned. You may quickly disregard this thought as unthinkable, but I'm here to tell you that in an age where covering up the less than perfect about our humanity, is more important than being as we were created, the "Pollyana-ism", as you referenced, is sadly the majority. I believe that Jesus, were he next to you in human form, would hold you in his arms and say "dear child- you have already been given what you are so longing for- it is here, take it..."

As Anne LaMott would say- faith is not being certain- Faith is in the not knowing and just letting that be your truth (she may have said something totally different, but I think this was her point). :)

Jo's Corner said...

Just think ... 99% of those babies do not have TONS of Prayers rushing up to the Heavens for them. But, that tiny little 1% will have Our Lord moving mountains to get that ONE little baby all that he needs to be Healed!

(Personally, I hope that 100% of those babies are Loved and Wanted and Prayed for!!) You have chosen Life for your little man. I Pray that your story will touch the hearts and Souls of many...who might sadly, make a different choice!

I am Proud that you have made a Choice to put Ewans Life in Gods Hands!

Hugs ~ Jo

allie :^) said...

it is not easy when you are called out and named the 1 in a million...allie b. :)