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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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For Libyans, Is a Tiny Boat In A Huge Ocean the Only Way To Get Care?

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“Unable to get specialist care for his six year-old daughter in Libya or a visa for treatment

abroad, Abdulhakim Shaybi bought a motor boat and set off with her last month across the Mediterranean. Two and a half hours into their journey from Sabratha in western Libya, they reached a European ship deployed to rescue migrants.

‘I raised a white flag to the ship in a sign of peace,’ Shaybi told Reuters by phone this

week from the Italian city of Genoa, where his daughter Sajida, who has the rare blood cell disease aplastic anemia, is now undergoing tests. ‘My friend told them that we have a sick little girl.’

‘We are only conducting emergency operations now,’ General Manager Mukhtar al Habbas told Reuters [from Tripoli]. ‘We have no anesthetic, sterilizing materials, or medical gauze, so how we can work?’

It is a similar tale across Libya. About half of the country’s 159 hospitals are either closed or barely delivering services, said Haroon Rashid, a World Health Organization official.”

The current health care situation in Libya is so precarious that the father of a sick young girl risked an ocean crossing to get her the treatment she desperately needs. Nearly 3,000 refugees died this year alone, making this same crossing.

This is why we continue to work in Libya. This is why we partner with Libyan surgeons, cardiologists, and nurses—so desperate fathers don’t have to make these kinds of choices.

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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Saleh’s Journey In Five Photos

Saleh’s Journey In Five Photos

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Saleh before surgery, happy to be in his father’s arms.

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Saleh, the morning after his open heart surgery: sitting up straight in bed, demanding water. Yelling, actually.

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At the end of his bed: a stash of treasures his parents brought, including packs of stickers, two plastic horns, a kaleidoscope, and a yoyo.

Already played with and discarded: yellow sunglasses, a small rubber duck, a superhero ring, a puzzle, a stuffed Mickey Mouse, a bottle of bubbles, and a little stuffed baseball.

Determined to open: a tube of toothpaste to brush his teeth. Demands for water increase.

Number of times he tried to climb out of bed: 3

Number of times he tried to pull out his chest tube: 3

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After much coaxing and head rubs: a nap.

It’s been just hours since Saleh’s open heart surgery, and he’s doing just fine!

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Why Libya?

Why Libya?

“More than 80% of our hospitals are either closed or not functioning properly” -Reida El Oakley, eastern Minister of Health, Libya.

“The instability exacerbates an already catastrophic situation. The so-called Islamic State group has established a stronghold around the coastal city of Sirte; a bombing campaign by a coalition of western powers is probable. Libya is home to thousands of militias. It cannot control its borders; migrants en route to Europe stream into the country.”

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“A humanitarian emergency is gathering. Almost 2 million Libyans have serious unmet health needs and more than 1 million are at risk of food insecurity.” (Libya’s health crisis looks set to worsen by Talha Burki, The Lancet, April 2016)

Why do we travel to Libya, when other international groups consider it too dangerous? Why do we work so hard with local doctors and nurses to make surgeries happen when it sometimes feels like swimming against the tide?

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Why do we gather donations of supplies from around the world, pack heavy duffle bags, and wrestle with airlines and customs agents in order to have the basic materials we need to work?

Why do we meet with government ministers and hospital administrators, and advocate for the kind of change that will make a permanent pediatric heart programme possible, so Libyan families don’t have to worry that they will lose their children before they get care?

Why do we keep going back to Libya?

It’s because of the children.

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It’s because Libyan children can’t wait for every militia to lay down their arms to get their heart surgeries. They can’t wait for every politician to come to the table and agree on a path of peace before getting their heart healed. Libyan children just don’t have that kind of time.

It’s because we can be part of the solution. Instead of waiting for conditions to be right, we can help local health care professionals to make conditions right. We can teach surgical and care skills that spill out past the pediatric cardiac unit and into the wider health care arena. We can partner with dedicated local professionals who have vision—and help to make it happen.

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You don’t give to Cardiac Alliance because we work in your neighbourhood. You don’t give because you believe in quick solutions. You give because you know that few will go to the places that need the help most, that change can take time, and because you know it’s possible—together.

Salima and the Complexities of Down Syndrome Babies

Salima and the Complexities of Down Syndrome Babies

The large room was lined with beds, each a home-base for a mother and her child as their waited their turn to have surgery and graduate out of the ICU. Mothers whiled away their time talking and fussing over their babies.

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I made my way to Salima’s bed, and sat on the edge beside her mother. “Salima is beautiful.”

“Really? Come with me…” Salima’s mother hopped off the bed and waved for me to follow. She was dressed in a long, black abaya that brushed the floor, and took a moment to quickly fix her face veils into place before we we walked out of the ward. We made our way down the long hallway and out to the open area where the fathers, leaning against tile walls, spent their time waiting.

She motioned her husband over and we stood in a little circle facing each other. Salima’s mother, with a big grin on her face said “She says Salima is beautiful!” Without missing a beat, her husband leaned in and asked me “Who does she look more like…her mother or me?”

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It was easy to fall in love with Salima—doe eyes, a darting tongue, and hands that clasp in the sweetest way. It was also easy to fall in love with her because we got to spend a lot of time with her.

Children with Down syndrome, like Salima, often have complicated heart defects and complicated recoveries. Their recoveries take longer, and there are sometimes setbacks. Setbacks are particularly hard to take for parents who watch other children recover quickly—sometimes within a day—and leave the ICU, while their own children stay. It’s hard.

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Long recovery times can make ICU management complicated. The number of surgeries performed is directly related to the capacity of the ICU—if there aren’t open beds and the corresponding staff available to receive children after their surgery, then the surgery can’t be performed. As a result, other children have to wait longer for their surgeries.

In many parts of the world, children with Down syndrome have a hard time getting surgery at all. They are often deemed unworthy of scarce resources.

Our team intentionally includes children with Down syndrome, like Salima, in every surgical mission. We know the value of these children, both to their adoring families, as well as to the wider community.

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Before she was discharged, Karen—one of Salima’s nurses—got a photo of the two of them together. During her stay in hospital, Salima’s hair has filled in—grown longer and darker. She is bigger and more active. More of her personality is shining through—with lots of busy squirming when she feels well, and quiet little bird-like squawks when she doesn’t.

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Upstream

Upstream

“Where does the blood flow come from? And where does it go?” Dr. Rodriguez paused a moment before repeating “Where does the blood come from, and where does it go?”

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Dr. Rodriguez was talking as much to himself as he was to the local cardiologists beside him. He carefully studied the illuminated echocardiogram screen, then turned back to the cardiologists. Dr. Miriam passed the ultrasound wand over each child’s chest—again and again honing in on particular spots of each small body. They spent as long as necessary with each child to figure out their own unique physiological puzzle.

But isn’t every heart the same?

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When an adult develops a heart condition, doctors look for disease or damage to a “normal” heart. The doctor knows exactly where to look, and has a good idea what will be found before ever seeing an image of the heart. “Normal” hearts are all made pretty much the same way.

In children born with congenital heart defects, every heart is different. Some children have 3 heart chambers instead of 4. Some are missing ventricles, or have them crossed. There are countless problems and variations, so it’s a challenge to determine exactly what path the blood takes.

Dr. Rodriguez coached the cardiologists to look further than the defect itself—to figure out the larger picture. Often the first answer—the obvious answer—doesn’t provide the best solution for the child’s overall health.

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Zaid and his heart provide a perfect metaphor for Libya and the troubles it’s facing.

Libyan children need heart surgeries—so providing heart surgeries is the best solution. Unless, of course, it isn’t.

When we provided Zaid with heart surgery, we helped him and his family. When our doctors and nurses spent crucial time teaching local doctors and nurses—honing diagnostic skills, developing new surgical techniques, reinforcing best nursing practices—we didn’t just help Zaid. We helped the whole country.

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Libya doesn’t have the skilled professionals it needs to take care of it’s own children. Every time we return, pairing surgery with education, we bring them closer to never needing us again. We work toward rising the tide in the Libyan health care system—encouraging a culture of highly skilled excellence.

The situation in each country we work in is a little different. And just as we make sure that each child’s heart gets the right correction, we make sure that the solutions we bring to each country help the broader needs. When you donate, that’s what you help to make happen.

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