“Levi is a little comedian,” Kristen says about her 4-year-old son. “There’s not a day that goes by that he doesn’t make me laugh. He loves music, he loves playing; he’s just a little wild child. Luke Combs is his favorite country artist. His grandfather got him a karaoke machine for Christmas with all the Luke Combs CDs in it. He even named his pet fish after him.”
This happy scene is not what doctors were predicting for Levi in his first year. Based on what they saw, he would never be able to sing with a karaoke machine, never tell a joke, never name a fish, never make a sound at all.
He was born with Pierre Robin syndrome, a condition marked by a deeply recessed chin and a cleft palate. To correct these problems, surgeons in another hospital (the pediatric division of an adult hospital elsewhere in Connecticut) performed jaw surgery on Levi when he was two weeks old. “They essentially broke his jaw and put metal rods in,” Kristen says. “He had little screws that hung out of his neck. We joked and called him ‘Baby Frankenstein.’ Every two weeks they would turn these screws, and it brought his chin out.”
The surgery itself was a success; the trouble began during recovery. He had a breathing tube during that recovery, and when the tube was removed, he went into respiratory failure, so the tube had to go back in. “But his throat was pretty swollen from the surgery,” Kristen says, “so when the doctor put in the breathing tube, she damaged everything, all the way down. That included his airway and his vocal cords.”
Of course no one had any way of knowing that at the time. The breathing tube was essential to keep him alive, and while certainly the doctors could assume his throat was swollen, they had no reason to think inserting it would cause this kind of damage. In fact, the problem only became apparent when the second tube was removed. “We noticed right off the bat that something was wrong with him,” Kristen says. “Every time he drew in breath, he squeaked like a squeaky toy and he had no voice. He couldn’t cry, he couldn’t do anything.”
He was in the adult hospital for several more weeks, without any answer to explain this problem and with Levi’s condition progressively getting worse. Finally, Kristen and her husband decided to transfer him to a children’s hospital in Massachusetts, and by the time he arrived, he was in critical condition. “They brought him into the OR,” Kristen says, “where a huge team of surgeons did a scope of his airway. That’s when they found that with that last intubation of the breathing tube, Levi had developed massive amounts of scar tissue in his airway. They said he was breathing through a space the size of the tip of a pen.”
His vocal cords were so damaged that they had scarred up and fused together. They were paralyzed. So at three months, Levi had a tracheostomy (in which a tube is inserted through an incision in the throat below the vocal cords to allow air to get to the lungs when the patient’s airway is blocked) and a feeding tube inserted in his belly. In other words, his throat was entirely bypassed. Finally, Levi could breathe easy.
After a month at that hospital—while his parents learned to care for a child with a tracheostomy—and another month in a rehabilitation hospital being weaned from the powerful medications he had been given, Levi finally came home for the first time when he was five months old.
But he needed ongoing care and therapy, so his parents had to make a choice about where to take him, which was not easy, given their history with hospitals. “We had heard a lot of good things about Connecticut Children’s,” Kristen says, “so that’s where we decided to continue Levi’s care.” The parents met with the head of the Center for Airway, Voice, and Swallowing Disorders, Nicole Murray, MD, and her team, who would be caring for Levi. “When I first met her,” Kristen says, “I told her that I had so many trust issues with doctors at that point that I might not be the nicest person, and I apologized in advance for that. She said, ‘I get that, and I’m going to do everything I can to give your child a voice.’
The intentions were good, but when Dr. Murray began treating Levi, even she thought it was unlikely he would ever speak. Still, she wasn’t about to give up. She performed multiple bronchoscopies on him, using a thin tube with a laser on the end. She used the laser to cut away the scar tissue around his vocal cords and then put in a stent in his airway to let the tissue heal. “It involved a lot of back and forth, multiple surgeries, and a lot of ‘let’s try this and see how this works,’ Kristen says. “That doesn’t mean it was random, because I think Dr. Murray is a genius. But it was a unique case, as I understand it.” All that innovation, expertise, and dedication paid off. “When he was almost a year old,” Kristen says, “he started making little “ooos” and “aaahhs,” and from there he just broke down every barrier that was set in front of him. He had his trach removed in July 2020 and his feeding tube removed in November. He’s now breathing fine, and he eats and drinks me out of house and home. I’m obviously biased, but he really is a little miracle kid. There were times when I didn’t think I was going to make it. But he just kept pushing and kept smiling and kept persevering. It’s as though he was saying, ‘Oh, they’re telling me I can’t do this thing? Well, watch me. I’ll do this thing plus this thing!’”
Levi will still be coming to Connecticut Children’s for follow-up visits for the next couple of years, to be sure there are no residual effects from all the anesthesia he’s been exposed to. He still struggles with his speech, but he is talking and singing. And that’s music to everyone’s ears.