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How You Ended A Mother’s Desperate Search For Surgery

How You Ended A Mother’s Desperate Search For Surgery

Every mom’s heart aches when her child is sick. It’s so hard to see them suffer and not know what’s going on, or how to help.

For some moms it’s extra hard. When Yossef came down with the flu at two months old, he was taken to see a doctor. The doctor diagnosed not only the flu, but something much more concerning—there was a serious problem with his heart.

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Yossef’s mom is a pharmacist and works in a hospital. She saw her son suffering, and she knew exactly what was going on. Because she knew the Iraqi health system very well, and how few resources are available for children like hers, she panicked—how would she ever find the help her son needed?

Yossef’s parents took him to the two best heart centers in the country. Both visits were fruitless—they were told there was nothing that could be done for their son in Iraq—his condition was too complex. He would have to be taken to another country for surgery. This may as well have been a death sentence. Despite the fact that both his parents work, Yossef’s family didn’t have the money needed to take him anywhere outside the country for surgery. Instead they took him home and cared for him they best they could.

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Yossef was always sick, plagued with colds despite the fact that he was always kept inside. His mom gave him treatments at home, but of course they couldn’t address his underlying heart condition. One day while working at the hospital, she heard that a team of pediatric heart specialists would be coming to her hospital to perform heart surgeries on children with complex heart defects.

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Yossef was out of options, and that’s exactly when you made it possible for us to show up. We assessed Yossef, performed the heart surgery he needed, and even did after-care by the light of cell phones when the hospital power gave out.

We were able to give Yossef a solid base to build his future. And Yossef’s mom? She lost the weight of the world in that operating room.

And thanks to our amazing donors, it all happened inside Iraq.

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Before Surgery, Falah Was Falling Behind—Not Anymore

Before Surgery, Falah Was Falling Behind—Not Anymore

When Falah closes his eyes, he sees himself high above the clouds, in the cockpit of a fighter jet. When he imagines his future self, he is a pilot who helps to defend his country from the forces which seek to destroy.

But today Falah is laying in his hospital bed recovering from the surgery that saved his life.

Falah is a normal 16 year old. He loves to watch war movies and play first-person video games. His favourite soccer player is Christiano Rinaldo and he has favourite meals that his mom cooks (chicken or fish, please!).

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But in one important way Falah was always different from his peers—he couldn’t play. He was born with a heart defect that wouldn’t let him.

When he was very young, his heart defect was less of a problem. In fact, his family didn’t even know that he had a heart defect! But as he got older, his heart wasn’t able to keep up with his growing body. He was often tired. If he was out in the summer sun too long, he would pass out. Two years ago he was riding his bike home from school when he passed out on the side of the road. His family rushed him to the hospital. Falah complained to the doctor that his heart was racing and it hurt.

At fourteen years old, the heart defect Falah’s was born with was finally diagnosed.

School became more difficult for Falah, as his heart struggled harder to keep up. He was always so tired. Often he got dizzy, and couldn’t see the words in his textbooks. Sometimes he passed out in class. His tight-knit group of friends tried to help by raising up his legs to get more blood to his heart.

This year Falah was asked to leave school—he was too far behind his classmates.

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Falah’s routine changed. Instead of the daily pattern of classes, he now had a weekly pattern of doctor’s appointment. It was amazing that Falah was still alive at all—many children born with his type of heart defect don’t live this long without surgery. His doctor told Falah’s family that he wouldn’t be able to get the surgery he needed in Iraq—there simply wasn’t the necessary equipment or skilled doctors. They applied to the government to get surgery outside the country, but heard nothing after months of waiting. Falah’s mother was crushed with a deep sense of depression, worried that her son wouldn’t live long enough to get the surgery that could save his life.

And then one day, at one of his weekly check-ups, Falah’s doctor told him that there was an international team coming to perform the kind of surgery he needed—us.

We were able to perform the surgery Falah needed to live. He survived the long waiting that lead up to that day, and now he flashes a big thumbs up when we ask how he is feeling.

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Recovering in his bed, as we remove wires and tubes no longer needed one-by-one, Falah and his mom are able to think about his future. He talks about returning to school. His mom hopes that Falah can have a successful life—that he will go to college, and simply be an ordinary boy.

But the very first thing Falah plans to do when released from the hospital is to play soccer. He wants to play soccer with his friends, the same friends who cared for him when he passed out in class. Falah might not become a fighter pilot, but now he can fly on the soccer field, as fast as his legs will carry him, just like his hero Christiano.

Giving Orphaned Zahraa Her Future Back

Giving Orphaned Zahraa Her Future Back

Sometimes living takes you by surprise.

Zahraa was in the step-down unit when we asked what her hopes are for the future. Today is just the first day after her surgery, but she is already well enough to smile at silly jokes. She is relaxed in her bed, and turned down the pain medication our nurse offered.

“What are your hopes for the future, Zahraa?”

“I don’t have any.”

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Zahraa’s family knew she had a heart defect since she was a baby, but she functioned pretty well, so they didn’t pursue further treatment. They thought she might grow out of her heart defect, as some children do.

Life got complicated for Zahraa. She became an orphan. Both of her parents passed away—she and her older sister have had to learn to make their way in the world together.

Two weeks ago, Zahraa passed out. When she was found, she was bleeding from her nose and mouth. Knowing her history with a heart defect, she was rushed to the hospital. Her symptoms worsened quickly—she began losing weight, and her colour changed.

When we first met Zahraa, before her surgery, we asked her if she was nervous.

“No, not at all.”

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She seemed completely relaxed, at ease with whatever might happen in the next several hours. She talked and laughed, and flashed her beautiful smile. Zahraa faced death squarely in the face, and didn’t even blink.

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Today, Zahraa is a 15 year old girl with a great prognosis. Together we provided her with lifesaving heart surgery, and turned her world upside down.

Together we made sure that Zahraa needs to learn a new skill: how to dream about her future.

Meet Little Umalbanen in Basra, Iraq

Meet Little Umalbanen in Basra, Iraq

She was blue. Well, she was beyond blue actually—purple. We started the day with a little purple baby thrust into our arms.

“She doesn’t look very well.” That might be the understatement of the year. Umalbanen was admitted immediately, and examined to see just what was going on. The verdict? She was hours from death.

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We’ve recently been to Basra, a city tucked into the south of Iraq, near the border of Iran—providing heart surgeries to children who can’t get the care they need to survive.

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For six months—Umalbanen’s whole life, in fact—she struggled to live. She was born with a heart which routed blood the wrong way. This meant that her body wasn’t getting oxygen.

Her very cells were suffocating.

When the surgeon opened her chest on the operating table, her little heart was black. And that little black heart was an immediate and stark reminder of why our pediatric heart surgery program in Iraq is so important.  

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Rates of congenital heart defects in Iraq continue to be high, in part thanks to the chemical effects of war. Iraqi children can’t seem to catch a break, as the current war with ISIS ensures another generation of children will need surgery in order to survive.

It takes decades of stability to create the kind of teaching programmes that produce medical professionals capable of tackling complicated illnesses. Iraq doesn’t have the luxury of waiting for that to happen. We were invited to come and teach, in spite of the current war and instability—and we said yes!

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“You cared for her like she was your own family…” It caught Umalbanen’s mother by surprise.

Our vision is that in the future all children with heart disease, no matter where they are born, will be able to receive the medical and surgical care they require to live a long and healthy life—including Iraqi kids.

Stories from Iran: Meet Sima And Tarane

Stories from Iran: Meet Sima And Tarane

“What is my greatest dream for my daughter? With a little laugh, Sima replied, “To be human, of course.”

There is nothing I want for Tarane, nothing more important in life than to show kindness to others, for her to treat the world with understanding and respect. That is what being fully human means.”

Her words echoed across the pediatric ward full of children and mothers waiting to receive a lifesaving heart surgery this week. These were not easy words to say with a sick child on her lap. There are no heart transplants in Iran, which means Tarane’s life isn’t secure. It would be natural for Sima to zero in on her daughter without noticing anyone else. Instead, she is looking at others and hoping her daughter will grow up to show kindness to them.

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Sima lives in a place full of challenges, and those challenges could tempt her to go numb toward others.  She decided to reject the bitterness and self-concern that grows when there isn’t enough to go around. She is a fierce mother who loves her daughter. She decorates Taranes’ hospital bed with enough pink to ice a cake, topped off with Barbies on each of the corners. She is reminding Princess Tarane to see  beauty as she walks through hard things this week.

Sima knows what kind of daughter she’s going to raise —she can see Tarane’s future. Together, our team is going to mend her heart so she can run into that future and show the world what one person can do when they choose to be fully human.

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Walking up and down the stairs after surgery meant the world to Tarane. Finally, her heart was able to keep up with her curious, four year-old need to explore and climb. Her eyes lit up as she climbed up and down with Sima trailing behind.

Stories from Iran—After Lifesaving Surgery, Aylin’s Parents Dream About Her Future

Stories from Iran—After Lifesaving Surgery, Aylin’s Parents Dream About Her Future

“You’re beautiful,” Aylin’s mother sings to her. “We love you Aylin, the world is so beautiful with you in it.”

Aylin or “Ducky” as we call her, fought for her life from the day she was born, but she doesn’t have much to help her fight. Her mother whispers and sings to her, all six pounds of her. She tells her again and again how beautiful she is, how amazing this world is, how much she loves her. Sima is a fierce mother who sees more than Aylin’s tiny frame, she sees her future.

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With a mended heart, Aylin is going to be able to grow into all the dreams her family has for her year after year. All families disagree, and Aylin’s is no different. She is her family’s only baby and the hopes her parents have for her are high.

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“She will be a famous musician and play the piano,” her architect father says. That was his dream before his very practical mother said music was too risky, he should be an architect instead. Aylin’s father wants her to be able to follow her heart, even if it leads her to loving music instead of something more practical. Aylin’s mother smiles at her husband’s wild love for his daughter. She has other ideas about her daughter’s future. “A heart surgeon, so she can give life to another little girl the same way you gave it to her,” she says quietly.

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Because you decided to go with Novick Cardiac Alliance to Iran, this is what is being fiercley debated. Not whether Aylin will live, or if her parents can find treatment for her. Instead it’s if she will bring music into the world or hope as a cardiac surgeon?

I don’t know which one you would vote for, but now Aylin has a choice because her heart can take her there.

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6pm in the ICU

6pm in the ICU

Libya. Wednesday, 5:57 pm. ICU.

We’ve dimmed most of the lights, so the patients can sleep more easily. Sleep is valuable medicine.

Rouana’s mom sits beside her, gently cleaning tape scum off of her face with a damp piece of gauze, then feeding her a bottle. She talks in a soft voice, tipping her head back and forth making smiley faces. Rouana mostly just looks back at her mom, sometimes kicking her sock-clad feet. Her mom is quietly active in taking over her daughter’s care as she gets well. Bottles, diapers, cleaning—she goes about the business of loving her daughter in practical ways.

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Hunaida is tucked in the far corner, unofficially designated for “resting and growing”. Hunaida seems to have only two speeds…sleeping and HUNGRY! But now she is swaddled, laying in her mother’s arms, content after a bottle. Even though her mother is completely covered in black clothes from head-to-toe, a baby knows her mother—and she is so happy to be in her arms.

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Mayar is sleeping, after a big day of drinking a little juice and trying to cough. She was the most compliant child in the ward: patiently waiting for her surgery, doing little errands for her mom like putting stray hairs from the comb into the trash. She was quiet and without complaint. But Mayar has found her voice here in the ICU. She is resolute—she will not cough. It hurts to cough after surgery—she’s old enough to know that! But she needs to cough in order to get well. And so we work every angle we have to make coughing seem like a great idea.

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Awad takes his place in a bed in the middle of the ward, fresh from surgery. Dr. Novick and part of the surgical team stopped in to see how he’s doing before they start the next surgery. His heart didn’t want to stay stable, but for now he’s sleeping, and the ICU team are carefully monitoring his systems.

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‘The baby with no name’ is having an awesome day. She is so young, the aunties and grannies in her community have yet to name her. She is showing slow, but steady improvement after a day of instability. Lots of rest is in order now. The doctors at her bedside compare her progress over the last few hours, with the previous 24 hours.

The x-ray technicians have already been through. The biomedical engineer comes in to check pumps and cords. Critical care doctors and nurses from our medical team attend each bed, teaching local nurses the intricacies of care.

There is just one empty bed in the room, freshly made up with clean sheets and stocked with supplies. Another child will lay in this bed as soon as their surgery is over in a few hours.

The room is full and busy, calm and efficient, and the most honest picture of hope. Hope isn’t tidy. Hope isn’t passive. Hope requires investment and leaning hard into the most difficult places.

And it’s infinitely worth it.

We Love this boy! Meet Ali Eimad

We Love this boy! Meet Ali Eimad

Ali is getting so big!

We met Ali for the first time last November, when he received heart surgery near his home in Libya. Ali had a rough recovery. He was so sick, there were days we wondered if he’d survive

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But Ali did survive, and he continues to grow.

One of the bonuses of returning to Libya several times a year is seeing kids from our previous surgical missions. It was great to see Ali’s family in April. It was even better to see Ali’s family this week—taller and stronger than ever! His parents are diligent about getting Ali in for a checkup every time our medical team is in town. His mom showed us a picture of Ali’s new baby sister on her phone. It was the kind of normal, beautiful visit you have with friends you haven’t seen for a few months.

This is the amazing transformation that our donors make possible.

The donations that helped Ali get his lifesaving heart surgery last year, didn’t have just a one-time impact. Those gifts transform every single of Ali’s life.

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Ali’s dad was given the joy of seeing his son break into a HUGE smile every time he goes into his father’s arms.

Ali’s mom was given the chance to watch her son grow into the spitting image of his father.

Every single day, in countless ways, donations multiply into new smiles and childhood milestones.

Ali’s family—they’re still so grateful!

The Importance of Time

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There is a bed in the ICU that has developed a special function over the last few surgical missions. It’s tucked in the back corner and quiet—it’s for resting and growing. It’s a bit like a greenhouse nursery for healing babies.

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Open heart surgery can be traumatic for little bodies. We see some children bounce back within hours of coming out of anaesthesia. But some babies need more than medication to heal—they need time.

Yomna was 3 months old when she got her surgery, but she was tiny! She didn’t have reserves built up in her body to help the healing process. So she spends her days swaddled and sleeping.

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Hunaida was two and a half months old when she had her surgery. And while she isn’t as tiny as Yomna, she had the same need for extra time to get well.

She didn’t make a fuss in the ICU. If she was dry, fed, and swaddled, she was content to sleep and heal.

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In healing hearts, we provide tangible repairs like surgeries. But we also know the value of intangibles—like a quiet bed, loving touch, and time.

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Meet Mayar, the Girl With the Fancy Hair

Meet Mayar, the Girl With the Fancy Hair

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For the longest time, we just knew Mayar as the girl with the fancy hair. With long hours to spend in the ward waiting for her shot at heart surgery, her mother had lots of time to sit on the edge of the hospital bed, brushing out Mayar’s hair, and creating endless combinations of braids and pony tails.

Mayar’s family is from a different part of Libya. They came to this hospital just for the chance to get heart surgery for their girl. In Libya, where the country is so fractured, your safety depends on your family—your clan. You trust the people you know—they have your back and you have theirs. With ISIS cells spread across northern Libya, it can be a frightening place without your extended family.

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What does it look like, when a father is desperate to get care for his daughter, but is afraid to take them so far from home? It means sleeping in your car on the hospital grounds for weeks while your wife and daughter stay in the hospital, waiting for their turn for surgery. It means turning down offers of help from local strangers because you feel so strongly that you need to stay close to your family—to protect them, just in case.

When it finally came time for Mayar to have her surgery, it was an all-night session in the operating room that started with a wonderful surprise.

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Our scrub nurse, Martina, began to read through Mayar’s chart, to prepare for this surgery. Martina found her own name in the notes from Mayar’s previous surgery, years earlier, in a different city. Mayar has the kind of complicated heart defect that requires more than one operation to repair. We didn’t recognize this grown up girl we had known as a baby!

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It was a full-circle moment for us. Part of our team gave Mayar the surgery that bought her some time. Now we had the chance to make the repair that would extend her life—and we worked through the night to make it happen.

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After surgery, back in the ward to recover a little longer before going home, Mayar got a new fancy hair style. It was the first sign that she was feeling like herself again. Finding her eating French Cheese potato chips was a pretty good sign too!

Moments like this convince us, again and again, of the value of committing to the development medical infrastructure. In returning to teach more, to perform more surgeries, we are able to save the lives of children like Mayar.

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