Baby boy’s narrow windpipe requires rare, risky surgery
Adlai Lemus appears to be a happy baby boy. You wouldn’t know by looking at the 11-month-old that he has a life-threatening disease.
“You can’t tell from the outside that there is anything wrong with him,” Adlai’s mother, Caroline Lopez, said.
Adlai, who will turn 1 on June 12, suffers from a series of birth defects, the worst a rare tracheal disease causing him to have a narrow windpipe. He’ll undergo a rare and risky surgery June 26 at the Children’s Hospital in Denver to widen his airway.
Adlai’s family moved to Grand Junction from Laramie, Wyo., a few weeks after he was born. When Adlai was 4 months old, his family took him to the doctor because he had a head tilt since birth that had not changed. Doctors recommended physical therapy, but it still did not fix the problem.
Doctors decided to do an MRI to identify the problem and found vertebrae fused together at his neck. They decided to conduct a CT scan to see if any other problems existed. When doctors tried to put in a breathing tube in conjunction with the test, they realized Adlai had many other maladies.
“Once we found that fused vertebrae in his spine, we began checking other things and found everything else,” said Adlai’s pediatrician Dr. Cassana Littler.
Doctors finally diagnosed Adlai with VACTERL association, a nonrandom association of birth defects that affect multiple organ systems, Dr. Littler said. The term “VACTERL” is an acronym with each letter representing vertebrae, anal, cardiac, tracheal, esophageal, renal (kidney) and limb abnormalities.
In addition to Adlai’s fused vertebrae, he also has fusion of his kidneys, resulting in one of them being larger, and severe tracheal issues. Doctors determined the trachea issues to be severe tracheal stenosis, a rare disease resulting in a narrowing of his windpipe, as well as pulmonary artery sling, which means an artery is wrapped around his esophagus as well.
These two rare diseases make it difficult for Adlai to breathe. Doctors recommended surgery to widen his trachea and fix the artery. Without it, doctors fear he may not make it another year.
“It’s a pretty rare surgery. There are only a few people in the country who can do it. It’s very risky,” Dr. Littler said.
Luckily, there is a doctor at the Children’s Hospital in Denver who can conduct the surgery, Lopez said. The surgery will last six hours, require a blood transfusion and keep Adlai under sedation for a few days after.
“My biggest fear is that he’s not going to make it through the surgery,” Lopez said.
For several days afterward, surgeons will have to do a ballooning procedure to ensure the trachea does not collapse.
A few weeks after the surgery, Adlai will face another operation. Unrelated to his VACTERL, Adlai also has estropia, a turning-in of one or both eyes.
Lopez and her husband, Sergio Lemus, also have two other boys: Dante, 7, and Sergio Jr., 5, who Lopez said are both in good health.
“We try to keep a positive mindset with our two older boys. But they know their baby brother is sick,” Lopez said.
Aside from Adlai’s illness being emotionally draining, it is also financially draining, Lopez said. Because of the rarity of the trachea repair surgery, it will cost the family $60,000.
A stay-at-home mom, Lopez said even the decent money her husband makes as an attorney is not enough. But surgery is the only option, she said.
“(Adlai) sure is a trouper. He’s been through so much in the first year of his life,” Lopez said.