Two weeks after Lori Riccomini gave birth, a specialist told her that her son Anthoney had the worst case of tracheomalacia that she had ever seen.
Tracheomalacia is a condition that occurs when the cartilage in the airway is made of soft rather than hard tissue, and the diagnosis meant, among other things, that Anthoney would need long-term medical assistance to breathe. This included a procedure to make a surgical incision into the windpipe, or a tracheotomy, and performing reconstructive surgery on his airway. Like so many children with complex disorders of the airway and digestive tract, Anthoney also had a litany of other related health problems, including painful gastrointestinal reflux disease, vocal cord paralysis, chronic lung problems and sleep apnea.
“No parent wants to hear this about their child,” says Lori. “I have a background working in obstetrics, so I spent nights researching what could be done. At that point, you’re desperate. Capital letters DESPERATE.”
Throughout the process, Lori’s biggest wish was to get Anthoney to a point where he no longer needed his tracheostomy tube. She was grateful that the tracheostomy was allowing her son to breathe, but it also had some extreme disadvantages, including endangering his life if the breathing tube or breathing hole malfunctioned, restricting him from swimming or going underwater, and social stigma. For nearly five years, Lori and her husband Tony spent countless hours looking for solutions, sometimes traveling around the country. They watched their son take nearly 30 trips to the operating room and undergo hundreds of diagnostic tests. The Riccominis met with dozens of specialists and doctors, often hearing contradictory advice.
In 2014, they met Douglas Sidell, MD, who had just come to Stanford from Cincinnati Children’s Hospital to start the Aerodigestive and Airway Reconstruction Center at Lucile Packard Children’s Hospital Stanford. Aerodigestive programs are specifically designed to treat patients like Anthoney because they allow multiple specialists to collaborate on a comprehensive approach to the extreme complexities of disorders in the airway and upper digestive tract. This collaboration allows physicians to solve difficult diagnostic problems and often improves medical outcomes. It also reduces the number of appointments and surgeries, decreases costs and lessens the emotional toll on patients and their families.
“When I first met Anthoney,” says Dr. Sidell, “our goal was to put him in an environment where we could make him feel comfortable and safe. As a team, we are able to reduce the burden and confusion that are often associated with complex medical care by bringing providers together through open communication and combined treatment approaches. We tackled his problems, not one by one, but in concert with each other.”
In order to remove the tracheostomy, the team needed to figure out how to improve the flow of air at several different points within his airway. This needed to be done without compromising his voice or his ability to eat safely by mouth. To do this, and to treat Anthoney’s other health problems, Dr. Sidell worked closely with other members of the aerodigestive and airway reconstruction team, including MyMy Buu, MD, a pulmonologist, and Nasim Khavari, MD, a pediatric gastroenterologist. He also worked closely with April Johnson, CCC-SLP, and Rhona Galera, CsCD, CCC-SLP, speech pathologists who specialize in voice and swallowing disorders in children undergoing airway reconstruction.
As someone who has worked in the medical community for 23 years, Lori knew the rarity and importance of communication like this. “A lot of times, you don’t find out what you need until you go from this doctor to this doctor. One hand doesn’t talk to the other. So when you have amazing doctors who are able to come together and brainstorm, it’s priceless.”
For some time, Lori believed that Anthoney would have to undergo a potentially dangerous second reconstructive surgery, but the team came together to recommend a series of less invasive surgeries. These, combined with the effects of the previous reconstructive surgery, allowed Anthoney’s airway to become strong enough to remove the tracheostomy within months.
“The fact that we didn’t have to do a whole other reconstructive surgery made all the difference,” says Lori.
More recently, Lori brought her son in for tests to get to the bottom of his severe reflux.
“They were able to scope him as a team,” she says. “Not only did Dr. Sidell get to see him, but Dr. Khavari was there, and Dr. Buu was there. You’re not doing a scope for GI here, a scope for airway there, a washing for pulmonology here. They are all there, looking at the same thing.”
Through this teamwork, they were quickly able to identify that the reflux was due in part to the fact that he was not digesting his food at a normal rate. Some mild antibiotics solved the problem.
Now able to fully function without a tracheostomy, Anthoney is thriving in second grade at Vallemar Elementary School, which he attends with his sister. Anthoney has very little speech impairment and his vocabulary is beyond his age level. He is thrilled to be able to enjoy activities that his medical problems once prevented him from doing.
“He just started swim lessons,” said Lori. “Many parents take this for granted, which I get, because I had three kids before Anthoney. But to see him finally swim underwater is unexplainable. We got to go on a Disney Cruise recently, and he went on a water slide and went into the Caribbean ocean. We never could have done that with a trach. He’s doing really, really well, and we owe it all to Dr. Sidell and the aerodigestive and airway reconstruction team at Packard Children’s.”
Dr. Sidell thinks that Anthoney and his family deserve a lot of the credit. “Any time we have success with our patients, we need to remember the care that occurs outside of our hands. This is of utmost importance, and most of it happens between patients and their families. Anthoney definitely had the personality to overcome the difficulties he has faced. And if things come up where he needs more care in the future, we will absolutely be here for him along the way.”
Perhaps most surprising, despite all he’s been through, Anthoney doesn’t fear going to see the doctor anymore. According to Lori, this is because Dr. Sidell is great at engaging with the kids and, more importantly, he can talk about Batman and Transformers like an expert.
Learn more at http://aerodigestive.stanfordchildrens.org >
