People sometimes ask us, “So, what happens to these kids after surgery?”
It’s a great question, but it isn’t easily answered. Thanks to you and our partners, we’re now providing exponentially more surgeries than we did during our early years. What once was 20 children per year is now 20 children per mission—over 300 children this year alone!
With that kind of volume, it’s difficult to keep up with all the families we help. But we still work to follow up with as many as we can; to make sure they don’t slip through the cracks. But the nature of that Followthrough has changed. Now we spend time encouraging local doctors to follow up with families, reminding them to call families for post-operative check-ups.
And, due to safety concerns, it’s often easier for families to come see us at the hospital (the last thing we want is to disrespect our hosts!).
Going cowboy and riding a taxi into downtown Fallujah to visit a family is not a good way to maintain relationships with partners and friends of the program.
One misstep could lead to someone getting hurt, the program getting canceled, and children not getting their hearts fixed—not something we’re willing to risk.
So we’re tip-toeing into these home visits with care, and Hussain was our first. Stay tuned for (hopefully) many more to come!
Remember this little boy?
Last February, I met Nassir and his father, who agreed to help me make a video sharing their surgery-search. It was my first time to do something like this and, as I’m sure you can imagine, it was a highly emotional experience.
Nassir’s father drove all over Iraq looking for a solution to his son’s heart problem. Many could tell him that his son was going to die, yet none could do anything to help. It was, as he described it, “a bad dream.” His boy couldn’t even run, play soccer, or ride a bike.
Then, just a few days ago I rounded a hospital corner and Nassir and his father were standing there; they had come back for a check-up. After exchanging formalities, Nassir grinned and stuck his elbow in my face. “He hurt his arm riding his bike!” his father said, smiling. “That’s awesome!” I practically shouted back.
After we parted ways last February, Nassir went home, started racing other kids, and finally began getting the right kinds of hurts: scrapes and bruises, not a malformed heart or a pried-open chest.
They also showed me that they received the video we’d made together, and dad explained that he keeps it on his cell phone and shows anyone who will watch—“I tell them what you all did for me and my boy.”
I had several other things planned for that morning, but I couldn’t help dropping it all and sitting with Nassir’s father, re-watching that video on his phone, and listening as the cardiologist gave Nassir a clean bill of health. It was beautiful.
You and the rest of the Coalition made all this happen, and I hope you know how grateful Nassir, his father, and I are to you for that. You helped bring them out of their bad dream; you made it possible for us to celebrate scrapes!
As they were waiting for surgery, I snagged Hussain and his dad for a quick photo shoot in the adjacent operating room. His father is nervous—he keeps grabbing his son and squeezing him. Hussain is normally too hyper to be held down, but he just sat there and let his dad hold him. I’m sure he could tell something was about to happen.
For me, this is the most unsettling time of the entire surgical process. It’s not while they’re in the O.R. or when they’re in critical condition in the ICU, it’s now. It’s the waiting. Once the child is on the table there’s no going back, but you can see the uncertainty in Hussain’s father’s eyes as he sits there wondering whether or not to go through with it.
If I’m nervous, I can’t even begin to imagine how he must feel.
As I sat with them, I attempted to exchange emails with Hussain’s father in order to send him the photos after the mission. He didn’t know what email was; a nearby nurse had to explain it to him. I tried to imagine how his father could not know about email and still be willing to trust his child to the doctors with all their medical technology and know-how. It must have taken incredible faith on his part to let Hussain climb up onto that operating table.
But thankfully, we have a phenomenal team with us this mission, and Hussain’s case isn’t overly complex. That doesn’t mean it’s a guarantee, but it’s at least comforting. Thanks for sticking with Hussain and his sweet father up to this point.
We’ll have more surgery updates for you in a few hours—keep reading!
We’re in Najaf for our eleventh surgical Remedy Mission, and Jeremy just met Hussain! If you’ve been following his story, you know that we’ve had ups and downs in our attempts to get him surgery. But he is finally getting it here. Watch the video to see footage from his first day at the hospital, and then follow this link to see his campaign page.
Stay tuned for surgery updates…
This is how Zainab (Zayn-uhb) looked when I first saw her.
I arrived at Remedy Mission XI late, and by the time I got there the doctors had already fixed her heart and she was in the ICU recovering. But it didn’t keep me from getting to know her father, Ali, who is an incredibly kind and gracious man. He and his wife spent hours with Zainab as she recovered—their love for this sweet little girl was so evident as they fretted over her.
It wasn’t long before she was released to the ward, which meant we needed to carry her upstairs. I was doing my thing, following along and snapping shots of the process. During our 5 story ascent, a mother stopped us and thrust her child at the nurse carrying Zainab, insisting that we look at her. It was pretty obvious that she wasn’t interested in rejection. So the nurse had to pass Zainab off to me while she looked at the desperate mother’s child.
Zainab had been wriggling and crying throughout this process, but about 10 seconds after she landed in my arms, she got really quiet and started breathing heavily. This little interaction rivaled my encounter last February with the Girl in the Red Dress—initiate second heart meltdown!
And that’s one of the most challenging things about this work. The ongoing cultural frustrations, the language barrier, and all the other little irritations don’t compare to the letdown of connecting with kids only to see them leave 48 hours later—but that’s actually a good thing!
It’s great that they’re able to get in and out quickly because it means our surgeons are operating well, the ICU staff are helping the child recover quickly, and the children are getting back to their lives at home and school.
Zainab is now home and doing well, and we hope she’ll be one of many this mission who start a new life with a healthy heart. Keep reading—we have more stories on the way!
As I write this, our 2012 interns are in the air and headed toward Iraq! So it only seemed appropriate to share a few lessons-learned by former intern Lauren Sawyer. Lauren wrote out 3 of the most beneficial things she took away from her time here in Iraq, and we’re hoping this year’s interns will also benefit personally as they help us save lives.
It’s been two full years since I boarded the first of three planes that would take me to Iraq.
Yet I still remember what I was talking about when I first landed in the desert country. Another intern, Lydia, and I were trying to rewrite the words to “Party in the U.S.A.” to fit our situation. By the end of the summer the song became “Party with the P.U.K.,” for a political group in northern Iraq. (Sophisticated conversation? Not so much.)
I have so many memories of that summer in Iraq: the places I ate, the taxi rides, the late-night chats on the roof of our house. But more than that, I have a series of life-changing realizations. Iraq changed me: it changed my perspective, it changed my behavior. Here are a few ways:
(1) People are just people wherever you go.
While in Iraq, a fellow intern Claire and I used to hum Regina Spektor’s song “The Ghost of Corporate Future” with the lyrics: “People are just people; they shouldn’t make you nervous.” I’m convinced we got that song stuck in our heads as often as we did because of that first line: “People are just people.” We found ourselves saying those words all the time, whenever we met another Iraqi we had something in common with.
The similarities between me, a young American girl, and the Iraqis I met were most clear in the English class Claire taught. I noticed how our Iraqi students watched the same TV shows as us (Vian loved “Grey’s Anatomy”) and had similar views on marriage, even, and education.
But more than that, I met people who were fundamentally like all people I knew in the States. I met fathers who loved their children, who would do anything to keep them healthy. I met children who loved games and were happy always—even when they were on their way to surgery.
Now that I’m back in the U.S., I still have opportunities to remind myself of this truth, that people are just people. I’ve spent the past two summers working for a nonprofit that advocates for people with disabilities. I’ve learned there, too, that people are just people— whether they are blind or have Down Syndrome. People are just people.
(2) We cannot accurately critique people without having truly experienced their culture.
Last semester I was sitting in my freshman-level philosophy course—as a senior—counting how many times the blonde freshman-but-sophomore-by-credits said something rude and untrue about Muslims. In that same class I heard my professor and other students make claims about how Iraq is “Worse off now that the U.S. troops are leaving”—as if these silly Midwest American civilians knew anything about life in Iraq.
My roommate and my boyfriend both told me to just say something and I did, once, without much effect. Changing someone’s mind about a culture isn’t easy.
Living in Iraq for two months taught me that you cannot critique or judge a culture without having experienced their culture like an insider. Visiting Italy for a few weeks is not the same as living like an Italian, speaking the language, shopping where they shop, eating their food, learning about their politics, their history. My two-month stint in Iraq taught me that I didn’t know enough about Iraq to critique it.
I need to keep asking questions. As soon as I stop asking questions and think I have it figured out, I’ll inevitably hurt someone or lead others to believe a lie. So when people like that freshman-but-sophomore-by-credits girl say something I know is untrue to my experience in Iraq, I need to do more than just correct them. I need to show them how to ask questions, to hunger for understanding, and to have an imagination, which leads me to my last point…
(3) We are called to be people of imagination.
I heard about the Preemptive Love Coalition when I had lost all faith in my future. I was 19 years old, and I thought that just because my life wasn’t heading in the direction I thought it should, it was over. But after reading PLC’s mission statement and then talking to Jeremy and Cody about their vision for Iraq’s future, my faith was restored. I recognized even before I boarded those planes that those working for PLC were people of imagination, and I wanted to be a part of it.
I’m convinced that you can’t do anything big and life-changing without having imagination. I doubt PLC would have ever existed without Jeremy and friends imagining a life without heart defects, without thousands of kids in line for surgery.
Before I worked for PLC that summer, I let myself live small stories that took little imagination. I expected my life to be like everyone else’s, without real risk, without adventure. But PLC showed me how to have an imagination, to dream up a better world for others and for myself.
Now, as I’m graduate-school bound (“real world” bound, as I say), I know that imagination will save me from living a self-centered life. Imagination will turn me into a person like the PLC staff and the doctors and the business people I met in Iraq, dedicated to changing the world—and able to.
You can read more musings by Lauren on her blog. Come back next week and we’ll introduce you to our new summer interns—can’t wait!
March 13, 2012 by Cody · Comments Off
On our last Remedy Mission inside Iraq, we were able to save the lives of seventeen Iraqi children! We also gave thousands of hours of training to Iraqi heart surgeons and nurses. But we ran out of time to save Hussain.
According to Iraqi doctors, it was illegal to help children with Down Syndrome under Saddam Hussein’s regime. Saddam viewed children like Hussain as a “waste of resources.”
But Downs children are God’s children, and they are important members of society. Today Iraqi doctors are ready to help save Hussain and so many more beautiful children with Down Syndrome. And we’re ready to help give them the training they need to do exactly that.
By giving Hussain his shot at lifesaving heart surgery, you will be telling him and so many others that they matter; telling them that we value them and that we’re in this together; telling them we care.
So, in honor of World Down Syndrome Day on March 21st, will you help us save Hussain and his friends by giving to our next Remedy Mission today?
Hussain is waiting! Give today to show that he and other Downs children aren’t a “waste of resources.”
I walked into a pretty standard Iraqi home.
I sat down on a couch while the television informed us of an Iraqi political event.
I drank Mountain Dew from a glass bottle, thankful for the familiarity of a soda.
Then I met Hawlbast, a little boy who loves fruit, his family and giving kisses.
I found myself looking him over – looking for some sign that would indicate he had been healed. Something more than just the scar I knew was beneath his shirt. This was the little boy who in March of this year was laying on an operating room table undergoing open heart surgery. Surely I would be able to tell he had
been through that.
been through that.
But there was nothing.
He merely played with his brother, pretended to answer the phone and thoroughly enjoyed looking at pictures of himself.
He was behaving like any young boy his age would and it hit me: this is healing. Healing is being restored to what we were meant to be. In Hawlbast's case, he wasn't meant to have blue, poorly-oxygenated skin or shortness of breath- all of which he had to endure prior to his surgery.
I'm not naive enough to believe that there are zero complications lying beneath Hawlbast's smile, but for now being restored in Hawlbast's case means spending time with his family and brightening their day.
So when Hawlbast laughed and threw his half eaten peach at his smiling dad, I smiled too. I'm sure my father endured the same at my hands when I was Hawlbast's age, and to me, that is a sign of healing.
June 2, 2010 by Esther · Comments Off
Last week I met Leah for the first time, and it was unforgettable. Leah is scheduled to leave with our next surgery group on July 18th. The beautiful green-eyed baby was the first Kurdish child I’ve interacted with since arriving for the PLC Summer Internship. I was blown away mostly because Leah taught me a lesson in faith when I was least expecting it.
Being a Down Syndrome baby with congenital heart disease, Leah has had to fight off the problems that both of those diseases have caused. This week, she’s winning.
Leah was hardly able to roll over at the last house visit, but Leah and her mom have been working on physical exercises designed to help build her muscles and after a month of pouring effort into improving her mobility the results were worth the wait. Leah began to show off some of those hard-earned skills by kicking her feet and cooing with rings in her mouth. Leah’s non-stop action included playing with her older sister, rolling to the other side of the room and back with incredible ease, and starting to prop herself up on her elbows while lying on her stomach.
It was beautiful to see that this little girl doesn’t know what it means to accept her current circumstances as her future reality. She is dying, and yet she continues to live out her life as it is right now – daily conquering the little things that stand in her way.
And although Leah has a hope of going to surgery and living a normal, healthy life, she’s oblivious to that. As a baby she doesn’t understand what any of that means, but she does know what it means to be tired of trying. And though she has undoubtedly felt tired, she pushes on.
And I started to think about how many times I limit myself when I feel overwhelmed with problems that seem too daunting to overcome. How many times do I focus on a problem to the point that I amplify it, instead of looking past it to a more desirable, attainable future?
For Baby Leah – and for all of us – obstacles exist to be overcome.
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April 30, 2010 by Jessica · Comments Off
Visiting Leah’s house this week was so much fun. She is developing well and her parents continue to work with her everyday to help her struggle through her Down Syndrome. We gave her some stacking rings, which she picked up and chewed and wore as bracelets while playing with her older sister, Dia, who is two years old.
A few weeks ago Leah’s mom watched me with a careful eye taking in everything I was doing with Leah. She then repeated it all after me to get Leah to engage in play rather than just lay still – which is going to be such a critical part of her development. Now, thanks to this simple modeling session and her mother’s diligence to practice and work with her, Leah can now roll over, sit up with little support, grab and hold toys and giggle about it all.
She is gaining weight steadily and should be just the right size for her surgery in July.