Doubters Welcome!—Clarifying Our Numbers For The Backlog
September 4, 2012 by Alicia · Leave a Comment

Since August 2011, we’ve publicly speculated about a backlog of 30,000 Iraqi children in need of lifesaving heart surgery. After decades of war and sanctions, in a country that lacks a national registry for heart defects, have you ever wondered where The Backlog numbers come from? Here’s a peek behind the curtain…
UNICEF states the approximate number of children born in Iraq in 2010 was 1,125,000i. Numerous studiesii estimate the normal rate of children born with congenital heart defects (CHD) to be somewhere between 6-10 out of every 1,000 children. As a percentage, that is somewhere between 0.6% and 1% “incidence.”
That means that every year in Iraq, between 6,750 and 11,250 children are born with congenital heart defects.
However, there are other factors that potentially raise the incidence of CHD in Iraq beyond 1%. Some of these factors include increased rates of diabetes, vitamin deficienciesiii, intrafamily marriageiv, and environmental exposuresv. It’s difficult to know exactly how much all of this combined would raise the incidence of CHD in Iraq. But we can confidently assume that at least 11,000 children are born with heart defects every year in Iraq, based on the incidence and amount of children born.

Thankfully, not every child born with CHD will have severe enough defects to require surgery. But somewhere between 25-50% of those 11,000 children will need surgery or else they will dievi. Sadly, the healthcare infrastructure in Iraq was decimated by sanctions, war, and internal strife and no longer has the ability to reduce its backlog or operate on new children born with CHD. Every year, 90% of the children in Iraq fail to receive the surgeries they require to survive.vii
Each new year, up to 5,500 new children will need surgery. This is what we call The Backlog. Unfortunately, some 31% of all children born with CHD will die in the first year without surgery; they would not make it to the next year’s backlog. Similarly, many infants die from other causes, so that would also lower the amount of children on the backlog. Amazingly, some children heal on their own.
When children come off the backlog from these, or any other, causes it’s called attrition. While it’s hard to measure the rate of attrition, it’s almost insignificant if we assume an incidence rate higher than 1%. If we simply began (albeit arbitrarily) with the beginning of the Iraq War in 2003, our estimates above would place The Backlog between 22,000 and 44,000 kids. That averages to around 33,000 children who need surgeries to survive.viii
This is why we work so hard each day to train Iraqi doctors and nurses across the country—it is only by establishing local heart care centers that these children will be served as they are born and the future buildup of The Backlog will be avoided!
References:
i Iraq: Statistics. UNICEF. Accessed on 4 June 2012
ii Hoffman, J. I., & Kaplan, S. (2002). The incidence of congenital heart disease. Journal of the American College of Cardiology, 39(12), 1890-1900.
iii ILDP, The Status of Women in Iraq: Update to the Assessment of Iraq’s De Jure and De Facto Compliance with International Standards, December 2006, pg. 45
iv “Al-Ani ZR. Association of consanguinity with congenital heart diseases in a teaching hospital in western iraq. Saudi Med J. 2010 Sep;31(9):1021-7.
v Jenkins KJ, Correa A, Feinstein JA, Botto L, Britt AE, Daniels SR, et al. Noninherited risk factors and congenital cardiovascular defects: Current knowledge. Circulation. 2007 June 12;115(23):2995-3014.
vi “Mitchell, S.C, Korones, S.B., & Berendes, H.W. Congenital Heart Disease in 56,109 Births Incidence and Natural History. Circulation, 1971; 43:323-332
vii Based on PLC surveys conducted with government officials, cardiologists and surgeons across Iraq.
viii The actual number may be less due to our inability to calculate real attrition and our inability (as yet) to estimate the actual increased incidence due to extraordinary factors in Iraq. We do not want to engage in hyperbole or sensationalism. But we choose the higher side of the spectrum because our mandate requires us to help the Ministry of Health establish a sufficient number of surgery centers across the country. Choosing the high number will not cause us to develop too many centers, but choosing the lower end of the spectrum might very well cause us to develop too few.
The Coalition For Good—Recognizing Our Partner in Iraq: Living Light International
June 23, 2012 by Cody · Leave a Comment

A wise man once told me if I ever wanted to kill a giant, I needed to hang out with a giant killer.
His point was that if I wanted to do something that made a difference in the world then my first task was to find someone that was already making a difference and then spend as much time with them as I could.
A week doesn’t go by where I don’t remember that advice. It’s something that shapes my best days and holds me accountable on my worst days.
Even today, it continues to shape my work with PLC. The “giant” we’re out to bring down is infamously known in our office and our writing as “The Backlog”. It’s a list with thousands of names of children on it, all who are waiting in line for lifesaving heart surgery. We know children who have been on that list for their entire lives – but we’ve also had the great privilege of watching children’s names be taken off that list after they’ve received a lifesaving operation during one our Remedy Missions. But The Backlog still has claim to thousands more.
We hate The Backlog.
We hate everything it stands for in Iraq and we strive for its demise. It’s an enormous and ugly foe. It truly is a “giant” and that’s why from day one, we’ve been looking for other “giant killers”. We’ve been on the search for other organizations that have the tools, resources, and downright grit to to make The Backlog a thing of the past.
That’s what led us to our partners at Living Light International (LLI).
LLI started taking on giants back in 2007. Currently, they lead one of the largest efforts to date in helping care for the orphans in Iraq. They embody love to orphanages overflowing with children by providing essential medical care, education, and support groups.
Simultaneously, they are on the front-lines of supporting women’s rights in Iraq. They tirelessly advocate on behalf of women, finding them jobs, providing them with necessary training, and empowering them in their local communities.
As if these “giants” aren’t enough for one organization, they are continually on the look out for the next one, which is what ultimately led them to The Backlog.
Since partnering with PLC in the fall of 2010, they have helped us take hundreds of names off the waiting list by helping us provide children with surgery. They have forged partnerships with doctors and hospitals all across Iraq, even to the point where we have had to tell them to stop because we couldn’t keep up with that kind of growth!
And they do it all of this pro-bono. LLI is completely volunteer led and they don’t have any intention of changing that. They continue to give and give without asking for anything in return.
And that’s why we love LLI.
They are indispensable in our fight against The Backlog and when this “giant” falls, it will be because the Coalition has these kinds of partners.
So join us in giving some of that love back to LLI. Click over to their Facebook page and thank them for all they’re doing to save kids like Hussain. (If they don’t respond to you right away then that probably means that they’re out on the front lines again, looking for the next thing to take on.)
Beating The Backlog takes a Coalition, and we’re grateful that LLI is a part of it!
Three Ways to Pursue Your Vision While in a Holding Pattern
February 3, 2012 by Jeremy · Comments Off

Note: This is the third post of a three-part series on defining and achieving Vision. Click the links to read part one and part two.
I remember those early, heady days when we founded the Preemptive Love Coalition and we envisioned—for the first time—an Iraq free of the burdensome backlog of children waiting in line for heart surgery. I remember calling families to alert them that we could finally send their child to heart surgery, only to hear on the other end of the line a polite-but-devastated, “It’s too late. My child died yesterday.”
I’ve sat in different waiting rooms across the country where children were waiting to be seen by the doctor, and I’ve seen children die before my eyes—literally while waiting in line.
We’ve said from the beginning that our mission is to “eradicate the backlog.” But our vision, stated more positively, is that every Iraqi child would have access to the surgical intervention they require to thrive.
Since 2003 and the start of the war, an estimated 50,000 children have been born into The Backlog. There is no way of knowing how many were already alive and waiting in line before that time; nor do we know how many we have lost during that period nationwide.
In that time, while seeking to serve these children, we have faced bombings, death threats, the imprisonment of our staff, armed conflict in the cities where we’ve worked, political roils, funding crises, and partnerships that have turned predatory.
The minefields you will have to endure while pursuing your vision are complex. All the easy stuff has been accomplished already! The things that remain are usually fraught with risk and even danger. Depending on your context, it will become impossible at times to move forward with your vision at all.
So what do you do when you are placed in a holding pattern? Like these Iraqi children I’ve sat with and held, the “waiting room” is where many a vision has died. Visions need activity. They need momentum. They need progress.
Below are three things I’ve consistently done to nurture vision while stuck, for reasons beyond my control, in the waiting room.
1) Plan. Whether the vision you are nurturing is one for your marriage, your children, your business, or some social issue across the world, nothing gets done well without planning. When you start to become dissatisfied with the world (marriage, business, etc) as it is; when you start to envision a better way to live or a solution to one of the world’s intractable problems, you must begin to plan.
Planning means different things relative to the vision in question. It might mean quiet research on the problem itself. It might require a lot of info gathering about proposed and enacted solutions currently in the marketplace. If the problem is really so bad, why has no one else tackled it yet? What are the obstacles to success? Is the space crowded with solutions already? What would you need to do in order to bring something new to the field? What will it cost if it all goes well? What will it cost if it all goes terribly?
Woe to the visionary who jumps in without planning. The waiting room is one of the most important places for a vision to begin, as it gives us time to make our missteps on paper before ever spending a dime or wasting the time of others in the real world.

2) Position. I’ve met many people along this journey who want to eradicate poverty, provide clean water, transform social problems across Iraq and the Middle East, etc. Among the worst things I’ve seen passionate visionaries do is a chronic failure to become well-positioned in the field of choice so that expertise and solutions might flow more naturally.
A well-intentioned twenty-something starts a new non-profit organization out of Idaho to help Darfur. A well-to-do family from the suburbs launches a ministry to the homeless downtown. A businessman seeks to change industries and launch a new venture at the invitation of a friend.
Sometimes these things work well enough. But if you are pursuing a vision for the future as it should be, and not merely as it is, you must position yourself for the desired change.
Whenever possible, I advocate networking and proximity. Trying to engineer a vision for another part of the world from the comfort of your living room in America is usually a bad idea. A reliance on internet material instead of diverse, first-hand accounts from your customers or constituents just won’t cut it. Whether you are in business or in international development—indeed even as a parent or a spouse—vision is about meeting the needs of others. We must be in a position to accurately understand the needs of those for whom we are pursuing our vision.
When the waiting room keeps you from fully acting upon your desired vision, sometimes the best thing you can do is move your body; get closer to the action; and hold more meetings with all relevant parties to ensure that you deeply understand the issues affecting them.

3) Pray. I won’t spend my time on a vision that I can accomplish on my own. Anything small enough to be accomplished by me, without the intervention of God, is a task that I am happy to forgo and leave for someone else.
When I pursue vision, I choose to work on things that overwhelm me and cause me to go to God in prayerful dependence. In fact, one of the greatest things for me about pursuing vision is the act of worship that it can become; not worship of the vision itself, but worship of the God who alone can sovereignly work through human freedom to bring about a better future.
I realize not all readers and visionaries will agree with me on this point. But when I am sitting in the waiting room of vision (or riding the wave of visionary success, for that matter), I commit myself again and again to God who hears, who cares, and who proactively works in this world to set all wrongs to right.
The snares that lay in wait for you on your journey to fulfill your vision are beyond number. The delays and unexpected detours have caused the death of countless visions and visionaries. Planning, positioning and prayer are neither exhaustive nor fool-proof, but without these disciplines, my vision that every Iraqi child would have access to the cardiac surgical intervention they require to thrive in childhood and become fully-contributing members of society would have long-since died in the many waiting rooms that have beset us along the way.
Are you in a holding pattern? Are you waiting on details to be clarified? Is your how still taking shape now that you’ve defined the what of your vision?
Keep planning, get positioned, and by all means I commend to you the God Who Cares.
These things are not passing. They are still a part of the active pursuit of your vision. Do you see it differently? Do you have other disciplines you use when stuck in one of life’s waiting rooms? I would love to hear about it. Send me an email by clicking this link.
On Vision: Defining The “What” Before The “How”
January 30, 2012 by Jeremy · Comments Off

Note: This is the second of a three-part series on defining and achieving Vision. Click here to read the first part of this series.
I was sitting in an Iraqi hotel lobby in 2007 when one of the hotel staff who was serving me tea approached me and asked: “Can you help my cousin? His daughter was born with a hole in her heart, and no one in all of Iraq can help her. Please, can you help?”
I had just moved to Iraq with my family to work with a different NGO. I didn’t know anything about heart surgery for children or anything about taking children to other countries for treatment.
From the beginning, helping this little girl seemed impossible. And she wasn’t the first child I’d met in Iraq with a life-threatening heart defect. In fact, it seemed like almost everyone knew someone with a child who was born with a messed up heart.
My work with the organization I was with was not capturing my heart. It seemed to lack both vision and impact. And, in any case, it was not set up with an exit strategy—there was no developmental finish line.
Around the same time, Cody Fisher began telling me of his NGO work with many of these children in need whose files were piling up on his friend’s desk as she sought to find them heart surgeries outside the country. The more I inquired, the more intrigued I became.
I learned that there were seven hundred children within a two hour drive of our city who were waiting in line for lifesaving heart surgery. You would never find a backlog that large anywhere in America!
Over the course of this journey, my wife, Cody Fisher, Michelle (then Bailey) Fisher and I chaffed under the tyranny of life as we knew it in Iraq.
After all, it seemed that many of these heart defects were not simply occurring naturally but were probably directly attributable to acts of war—both martial and economic. This was an issue of justice. As Americans, we felt directly responsible for some of this. But it was primarily as Christians that we decided to jump into the unknown and commit ourselves indefinitely to the cause.
Defining the cause itself could have taken us a number of different directions. I am grateful to God that we got this one right amidst all the unknowns: we defined the what before the how.
Would we create an organization primarily because Jeremy had met a little girl in a hotel lobby? No. Would we create an organization primarily because Cody had a few connections to get us off the ground quickly? No.
From the very beginning we established a vision that was far more grand than anything else in cardiac care nationwide.
“… to eradicate the backlog of Iraqi children waiting in line for lifesaving heart surgeries.”
Looking back, it was ludicrous. It was naive. But it was never a mere “dream.” It was a vision. (See my last post on my differentiation between a dream and a vision). There was a moral conviction behind it. It would never be enough for us to simply help the children who crossed our path. It would never be enough to clear the files or the “backlog” on our desk. We had to exist for all the children of Iraq who were waiting in line for lifesaving heart surgery.
Months after articulating our vision for a Backlog-free Iraq, I learned that the leading expert in the region had actually dumbed down the number of children waiting for surgery because he did not want to scare us off. The number was actually 5X greater—closer to four thousand children. We were still waiting on estimates from the rest of the country.
We started to suspect ten thousand children or more were waiting for surgery. And we were not smart enough at that time to really question how many new children were born into the country each year in need of heart surgery.
We were almost immediately faced with a crisis. Our 20-child per year pace was never going to “eradicate the backlog.” Our methodology—the how—could never see our vision realized.
Do we change our vision to meet our methods, or must we change our methods to meet our vision?
Nothing had changed in our desire to see Iraq free of a burdensome backlog. We had established our vision—our what—before we had a clear idea how we were going to bring it about. So we stuck with our vision and forced our methods to catch up.
We redoubled our commitment to eradicate the backlog. We personified “The Backlog”—for he was a devilish foe who needed to be vanquished by all the heroes like you who would partner with us in the coming years. The Backlog only existed because of injustice—both local and internationally imposed. To defeat The Backlog would be more than a triumph of our organization; it would be a victory for every family across Iraq, because every family across Iraq is susceptible to congenital heart disease, the number one birth defect in Iraq and in the world.
Our vision was still maturing, to be sure, but we got this one thing right: we established the what before the how.
There are other organizations that work into Iraq in an effort to help children with heart disease. But sometimes I wonder if the how has taken precedence over the what. Candid conversations often reveal a complete absence of vision; a settling for the methodology of today for lack of a compelling picture of the future.
Since our inception in 2007, we have made four major programatic (methodological) changes in an effort to stay the course and eradicate The Backlog. Every one of them was scary. Every one of them could have been a colossal failure. But vision demands innovation and risk.
Do you have a hard time accepting the world as it is? Do you feel morally compelled to work for a different future? Do you have a vision that you are currently nurturing or pursuing? If so, do yourself a favor: define the what before the how. Methods change with technology, culture and economics. Don’t focus on the how. Get your sweeping vision right by defining the destination point at which you want to arrive. Let the how work itself out one step at a time and don’t sacrifice your “what” for a method that leads you astray.
Can I be a helpful ear as as you try to work out your vision? Don’t hesitate to send me an email by clicking this link!




