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Rayan R.

The Boy Who Lived

It’s one thing to have a sick child. It’s something else entirely when your sick child is a patient at the same hospital where you work as a nurse.

For Jennifer and her son, Rayan, their experience became a 14-year journey to find the truth, nearly costing them everything.

Rayan was born a healthy, full-term triplet (yes, you read that right. THREE babies.) and went home just two days post-delivery. Jennifer had her hands full as she cared for all three newborns, but even amidst the chaos, she sensed something was happening with Rayan.

“At first, it seemed like he had a cold,” she explained. “He was a little raspy. I went to the pediatrician for a well-baby check, and the doctor mentioned something about tracheomalacia. I googled it, and it sounded like the noises he was making. People would stop me and say, ‘He sounds like Darth Vader.’ His breathing was so distinct, and he sounded like that all the time unless he was sleeping.”

The doctor told her that tracheomalacia occurs when the cartilage in the windpipe has not developed properly or was damaged. But they also said there are two types: primary and secondary. With primary, he would outgrow it. With secondary, he would not. They said, don’t worry, it’s primary. He’ll outgrow it. 

Just a few weeks later, the unthinkable happened. 

“I was home with all three of them, and Rayan stopped breathing and turned blue,” Jennifer told us. “I had to give him rescue breaths while waiting for the ambulance. There is nothing more terrifying than performing CPR on your child. That event basically kickstarted a long list of hospitalizations and misdiagnoses.”

At around 12 months of age, Rayan was supposed to have outgrown the complications from tracheomalacia, but he was only getting worse. To further complicate things, Rayan was getting treatment at the hospital where Jennifer worked as a nurse. 

“Having the guilt of questioning the care of my own hospital…it was difficult to accept,” she said. “I’m on both sides of it as a professional and as the parent of a patient. And so I decided to get a second opinion at a different children’s hospital.”

Thanks to her continued advocacy, the new medical team agreed to do an MRI on Rayan. They ended up staying for 2-3 weeks. By the end of the testing, six cardiologists were standing at Rayan’s bedside, telling Jennifer he had a congenital heart defect and needed immediate cardiac surgery.

“The doctor described it as being strangled inside by an extra aorta that encircled his windpipe and esophagus like a noose,” Jennifer recounted. “So he had his first heart surgery via thoracotomy that went well, and we were now convinced he was on the road to recovery.”

From that point until he was 12 years old, they thought he would get better and outgrow it.

But Rayan still had problems - not nearly as bad - but still many respiratory problems. Any cold led to oxygen, vest therapy, breathing treatments, etc. His airway was so closed it was like breathing through a straw.

“I couldn’t continue watching my son unable to breathe and play as typical children do,” Jennifer said. “So I pushed them to do another workup, and that’s when they found his circumflexed aortic arch, which stemmed from his original heart defect and was untouched during his first surgery.

“Rayan now needed a much more complex and complicated open-heart surgery to reconstruct his aorta and reposition it to the front of his body. He also needed to have his trachea sutured to the back of his spine to open it up with a new procedure called ‘posterior tracheopexy,’ which was only performed by a few surgeons in a few hospitals.”

Jennifer was furious. For 12 years, doctors had told her Rayan would outgrow his complications. She thought he was on the road to recovery, and the root of the issue hadn’t even been identified.

She never thought she would hear them say her son needed open heart surgery. Worst of all, no surgeon in the state could perform it, and Jennifer had to fight with her insurance to get approval for Rayan to travel to Boston for the procedure.

“It’s caused a lot of distrust and anxiety on my part with everything we’ve been through,” she shared. “But the silver lining is that I use advocacy with my child and my patients now.”

Rayan underwent a successful heart surgery in Boston and was moved from the cardiac ICU to the step-down unit. There, an ENT decided to perform a bronchoscopy to examine his air passages.

“I learned later that he had trouble intubating Rayan, which had not been an issue before,” Jennifer explained. “It caused air to enter his chest, which caused his heart to stop.”

Jennifer was standing in the coffee shop with one of Rayan’s surgeons when she heard a code being called over the intercom. She turned to the surgeon and said, “Aren’t you supposed to be with Rayan today?” He told her he was going and would check back with her. 

She later found out that he entered the procedural room to see that it was Rayan who was coding and rushed to save his life.

Have you ever counted a minute out loud? Felt how slowly those 60 seconds tick by?

For nearly 12 minutes, 720 excruciating seconds, Rayan’s heart was silent. His cardiologist held Rayan’s heart in his hands, manually pumping it to encourage it to start beating again. 

Silence. Squeeze, squeeze, squeeze. Silence.

With the help of internal cardioversion and other life-saving measures, that death-defining silence was finally filled with a pulse of his heart and quick electronic beep from the monitor. Rayan was alive.

Now, the family wasn’t just facing recovering from his prolonged airway issues, but cardiac arrest, too.

“We didn’t know if he would wake up as a vegetable,” Jennifer said. “We didn’t know if he would wake up at all. We chose to improve his quality of life with this procedure, and now we made everything worse.”

Miraculously, Rayan kept fighting. He would give little signs and responses to his mom’s bedside questions, trying to communicate with her. Right before he woke from his coma, he used his hands to ask her for his video game, making her laugh out loud. “Only my child would wake from a coma just to ask to play video games.”

When he emerged, she could tell he had some deficits from the cardiac arrest, but they were just so thankful it wasn’t worse - that he wasn’t dead.

Rayan is 14 years old now and still struggles with his mood and balance, but Jennifer pushed for a neuro evaluation that allowed him to get all of the therapies he needed to heal and recover. 

His diagnosis is invisible. You can’t look at him and know anything is happening with him. It’s not until you spend time with him that you might notice it - even then, it’s hard to understand his difficulties, let alone his emotional needs. 

It’s not black or white for Rayan; he falls in the grey area.

But in that grey, he’s adding his light. Rayan loves to play video games (see coma above), basketball, football, collecting shoes, and bike riding with his siblings and friends. The latter has been tough on him because it was a heavy lift for years just trying to keep up. 

He still has a dilated aortic arch, which is life-threatening if it ruptures. He’s been restricted in his activities but desperately wants to be seen like a typical 14-year-old boy.

“A doctor suggested we try an electric bike so Rayan can have control of his limitations while still having fun with his family and friends,” Jennifer said. “We searched high and low for just the right bike that can grow with him, and Rayan had his heart set on one that was way beyond what I could afford.”

This is a kid who survived cardiac arrest! Who woke from a coma after being clinically dead for more than 10 minutes. If his wish was an electric bike, then an electric bike is what he was going to get. 

Through the selfless and generous contributions of our donor family, we purchased a Surron X Bike from Lithium Powersports (and a helmet, chest vest, and bike lock…because boys) for a total impact of $5,335.

Rayan defied the odds. Over and over again, he lived in that grey area. Misdiagnosed, unable to breathe, complication after complication…and yet, he’s here. The boy who lived. 

To all those who made this grant possible, you have our deepest gratitude. Just know that somewhere in Texas, a teenage kid is pedaling alongside his friends, with wind in his hair, and crisp air in his lungs, the sweet sense of freedom all around him. Thank you for making it possible. Change more lives with us and DONATE HERE.

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