Saving Dino

Afflicted with a rare skin condition, the 11-year-old boy kept getting sicker–until he was admitted to Stanford Children’s Health.

By WP BrandStudio

By the time Dino arrived at Lucile Packard Children’s Hospital Stanford in June 2017, he couldn’t breathe on his own. A helicopter had rushed him from a hospital in Sacramento after doctors were unable to inflate his left lung, which had collapsed. It was the latest in a string of medical crises that had stricken the 11-year-old boy in recent months. He’d been in and out of different hospitals trying to manage flu-like symptoms and breathing problems, among other issues.

The doctors and nurses at Stanford Children’s did everything they could to try to expand Dino’s lung, attempting to reduct inflammation through steroids and even dilate individual sections of the lung. Nothing worked. He was sedated and a tube was placed down his throat. He was now dependent on a ventilator to keep him alive.

For Dino, the episode was the low point of a nightmarish descent in his health, and the beginning of a long period of recovery under the expert care of the medical staff at Stanford Children’s. And it all started with a rash.

A strange set of symptoms

One evening a few months earlier, a healthy Dino noticed something odd: His fingers and toes had lost all sensation and were turning blue. His parents rushed him to a local hospital, where a physician diagnosed him with the flu and sent the family home with a recommendation for an over-the-counter medication. The next morning brought new symptoms–Dino’s face was swollen, he began vomiting blood and he was beginning to have trouble breathing. Back at the hospital, a doctor noticed what appeared to be a rash forming on his neck. Still, physicians assured the family there was nothing to worry about and sent him home.

The next day, however, Dino could barely breathe at all. He was raced to a larger facility, where doctors performed a biopsy of the rash that had begun to spread over his mouth and other parts of his body. The diagnosis that came back the next day was “horrifying,” said his mother, Tracy Ruffino.

“It was Stevens-Johnson, and it was confirmed to be [accompanied] with pneumonia,” said Ruffino. “I have been in nursing school, so we see that in our drug books–this red label that says be aware of SJS. As nurses, you know, you Google it and you go ‘Oh, I hope I never see that.’ Unfortunately, I did.”

Stevens-Johnson Syndrome (SJS) is a rare disorder that primarily affects the skin, resulting in a distinctive red or purple blister-forming rash. It can also seriously impair the mucous membranes of the throat and nasal passages, which lubricate the body’s soft tissues and protect them from infection. In about 25 percent of cases, the condition is fatal. For those who do survive, symptoms typically last for a few weeks, usually the time it takes for the affected areas of the skin to die and detach. Complications resulting from SJS, however, can be permanent.

After the initial diagnosis, Dino was intubated under sedation for the next few weeks while physicians treated his pneumonia and SJS, applying steroidal creams to the lesions on his skin as they waited for the rash to run its course. Yet even with the SJS receding, his internal wounds–small lesions covering the inside of his throat–would prove to have lasting effects. Doctors believe that Dino’s pneumonia may have predated the SJS, and perhaps even triggered it.

Yet the subsequent damage to the mucous membranes in his air passages accelerated his respiratory crisis. He was released, but another pulmonary infection started wreaking havoc on his lungs, landing him at a different hospital based in Sacramento. Days later, with his respiratory system shutting down, Dino was airlifted to Stanford Children’s, the top-ranked pediatric pulmonary center on the West Coast and one of the largest in the country.

“Once the barriers and the inner linings of these organs are affected and start to break down, they’re set up perfectly to be infected,” said Michael Tracy, MD, a pediatric pulmonologist at Stanford Children’s who treated Dino.

Added David N. Cornfield, MD, Stanford Children’s chief pediatric pulmonologist who treated Dino, “I have never in my career seen the level of involvement and severity of the lower airways that this young man had [from SJS].”

Coping with the new normal

At Stanford, Dino was stabilized, yet still sedated, and dependent on a machine for oxygen. In the end, it not only took patience, but a multidisciplinary team of experts to get the boy breathing on his own. Dino’s care givers attempted repeated bronchoscopies, a procedure to examine airways, to assess the damage. These tests eventually set a course for Dr. Tracy and Dr. Cornfield to be able to bring Dino out of sedation, and replace his breathing tube with an oxygen mask, which he wore 24 hours a day. Soon, Dino was able to take off the mask during the daytime and just use a nasal cannula, consisting of two small tubes that fed oxygen into his nostrils. After about three months, Dino was deemed stable enough to leave the hospital, but his doctors informed his parents that his daily care regimen would remain extensive and complex.

According to Ruffino, Stanford Children’s made a difficult situation as easy as it could possibly be. “They’ve given us so many great tools,” she said. “I have all their numbers if I need to reach them, which was the biggest thing–I was afraid of taking him home and not knowing who to call if something failed.” Dino still needs a variety of equipment to help him breathe, including his nasal cannula and nighttime oxygen mask. He also uses a machine that physically shakes his chest at different rhythms and speeds for 30 minutes, three times a day, helping to improve the capacity of his one healthy lung. His parents are responsible for listening to his lungs with a stethoscope periodically throughout the day and monitoring his oxygen levels, refilling his tanks as needed.

The doctors at Stanford Children’s have cautioned that contracting another respiratory illness could be devastating to Dino’s remaining lung. As a result, during the cold and flu season, he spends most of his time at home–in a house kept as clean as possible–and has to limit his interactions with other people who may have viral infections. His teachers are some of the only people outside of his family he sees every day, stopping by the house to collect his homework and give him new lessons. Although Dino appreciates their efforts, he wishes he could simply go to school like he used to. “I always had friends to hang out with,” he said. Now, he at least gets to enjoy extended time playing his favorite video games, which he live-streams over YouTube. “I’m trying to reach at least 50,000 people to get on my channel,” he said.

Much has changed for Dino’s parents as well–and not just in their daily care for their son. “We’ve gotten pretty humble,” said Ruffino. Being at Stanford Children’s for the better part of three months, she said, meeting children suffering even more severe conditions than Dino’s, contributed to that. “That there’s a world out there with children that are falling apart, and these people are helping them.” She paused, trying to articulate her own experience. “To watch your child go in and out of consciousness and just gasp for air–,” she trailed off, choking back tears. “These people saved him.”

Learn more about the Pulmonary, Asthma and Sleep Medicine Center at Stanford Children’s Health.

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