Every breath you take

Connor Block

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Five-year-old Connor Block knows how critical air is to astronauts when they’re in space; he’s struggled to breathe his entire life. Due to a life-threatening condition, Connor was able to meet real astronauts at the Kennedy Space Center in Florida as part of A Special Wish Foundation. Connor’s journey started on March 3, 2007, when he was born. Like most second-time mothers, Samantha, Connor’s mother, had no complications during pregnancy. “The minute Connor was born, I knew something was terribly wrong,” says Samantha. “There wasn’t a loud wail in the delivery room. Connor wasn’t breathing; he was bright blue and floppy.”
 

Connor was resuscitated and placed on a continuous positive airway pressure machine, which increases air pressure in the throat so the airway doesn’t collapse during breathing. Connor was closely monitored before leaving the hospital. However, shortly after Connor was home from the hospital, it was evident his breathing was still a concern.

“Over the next few weeks, he was failing to suck, swallow and his breathing was almost like a wheezing,” says Samantha. “I felt like he was struggling to breathe every day, and he never cried because he wasn’t physically able to, which was terrifying.

 At Connor’s four-week checkup, he still wasn’t back to his birth weight. Connor’s pediatrician John Thomas, MD, at Wright-Patterson Air Force Base, where Samantha works, had concerns about his breathing. “My mother’s intuition kicked in and I took him to the emergency room at Dayton Children’s,” Samantha explains. “Connor was admitted for failure to thrive, and that’s when his testing started with a swallow test.”

From the swallow test, Samantha learned what she suspected all along – Connor was aspirating. When pulmonary aspiration occurs, food and liquid go into the lungs, which is often referred to as “going down the wrong pipe.”

“Connor was hardly able to eat,” says Samantha.” I had to literally take breast milk, put it in an oral syringe and squirt it down his throat since he had no suck reflex. Since he had so many problems swallowing, he would constantly gag.”
 
The pulmonary specialists at Dayton Children’s discovered Connor had tracheobronchomalacia, which is soft cartilage of the airways. The soft cartilage keeps mucus in the lungs, which causes coughing, wheezing, infections, and in severe forms such as Connor’s, respiratory distress.

According to Gary Mueller, MD, pulmonologist at Dayton Children’s, healthy children cough up mucus, but with the softening of Connor’s airways, he wasn’t physically able to cough and had extreme difficulty swallowing.

“Uncoordinated swallowing due to soft airways can cause someone’s diet to aspirate into their lungs, which can cause inflammation, damage and infection,” Dr. Mueller explains. “In turn, the infection can cause pneumonia, which can be extremely dangerous in small children. It’s a vicious cycle.”

“It was so frustrating because we knew things were wrong with Connor, but we didn’t have a name for his health issues,” Samantha shares. The pulmonary team referred Samantha to the genetics department at Dayton Children’s where she learned the cause of Connor’s severe respiratory distress was velocardiofacial syndrome, also known as 22q11.2 deletion syndrome (del 22q11.2). According to Dr. Mueller, pulmonary issues are rarely associated with 22q11.2 deletion.

“Connor’s soft airway cartilage was partially collapsing during his breathing cycle, which worsens when the lungs make more than normal amounts of mucus,” Dr. Mueller explains. “With infants, we use a percussion and postural drainage instrument, which gives high-frequency chest compressions to clear mucus from the lungs.  We also use antibiotic therapy to avoid infections and breathing treatments as the child gets older.”

“In Connor’s first years of life, the pulmonary team at Dayton Children’s had to teach us how to keep him alive and educate our family on the signs of respiratory distress,”

According to Dr. Mueller, a child’s airway with 22q deletion typically improves as they age. “Now that Connor is age five, the cartilage in his airways continues to firm and his breathing has continued to improve over time with treatment and medication.”

Because of Connor’s condition, he was eligible to receive a “wish” from A Special Wish Foundation, which grants the wish of a childor adolescent who has been diagnosed by a physician with a life-threatening disorder. Connor’s wish was to meet a real astronaut. Last year, Connor’s wish came true and the Block family traveled to Kennedy Space Center in Florida to meet an astronaut.

Today, Connor plays with friends, climbs trees and rides his bike like any other 5-year-old boy. Since birth, Connor had five cases of pneumonia, eight surgeries and countless hours of therapy.

However, thanks to the expert care at Dayton Children’s, Connor recently met a milestone - pulmonary specialists are no longer part of his regular care.

“Milestones for some children include a first sleepover,” says Samantha, “For Connor, it’s advancing so well with his respiratory problems, thanks to Dayton Children’s pulmonary team, he no longer has to be seen regularly.  That is something that’s definitely worth celebrating!”

 At times, Samantha thought about moving back to Michigan where her family is from, but decided against it because of Connor’s complex medical care. “If we moved back to Michigan, we would lose this invaluable care from Dayton Children’s that we have counted on,” says Samantha.

“From the moment Connor was born, we were thrust into caring for a critically-ill child who couldn’t breathe,” she shared. “It taught me that we didn’t have to drive hours to get the right care for Connor; we were fortunate that Dayton Children’s is right in our backyard. They kept my son alive.”


22q11.2 deletion facts

- 22q11.2 deletion syndrome is also referred to as velocardiofacial syndrome, DiGeorge syndrome, conotruncal anomaly face syndrome, Opitz G/BBB syndrome, CATCH 22 and Cayler cardiofacial syndrome. Multiple physician specialists initially described the condition. However, genetic testing eventually revealed the same deletion on chromosome 22 was related to these conditions.
-22q11.2 deletion mean there’s a small deletion or missing piece of chromosome 22 in the genetic makeup.
-22q11.2 is the second most common chromosome defect behind Down syndrome.
-22q11.2 is associated with more than 180 different symptoms and no two children have the same symptoms, making it difficult to diagnosis.

 

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