Luke Totaro - airway surgery

I am writing this on behalf of my sister, Kara, my brother-in-law, Matt, and my nephew, Luke Totaro. Luke is 4 years old and has a yet-to-be diagnosed condition that has led to dozens of tests, surgeries, and procedures since birth.

On April 5, 2021, at just 4 months old, Luke had a tracheostomy put in at Mt. Sinai Hospital to help him breathe due to a narrow, obstructed airway. His case was too complex for them, so they referred him to CHOP (Children's Hospital of Philadelphia) to be seen by their airway team. For the following years, he was and continues to be seen by the tri-state's top ENTs, endocrinologists, dermatologists, oculoplastic surgeons and ophthalmologists, geneticists, rheumatologists, immunologists, and more. He continues to both amaze and stump each of them. Although he continues to be a patient of these specialists, his home hospital is now the Cincinnati Children's Hospital, which has the top airway team in the country.

At his last visit (and scope of his airway) to Cincinnati Children’s Hospital this past fall, there was no improvement in his airway. His doctor suggested they try Laryngotracheal Reconstruction (LTR). This will involve cartilage grafts from Luke’s ribs to be inserted into his throat with the hope that it both widens and strengthens the narrow, scarred area. Luke will keep his tracheostomy tube in for the time being, as well as have a stent inserted during the surgery. Luke will need a feeding tube during his recovery.

This surgery is scheduled for February 18, 2025, at Cincinnati Children’s Hospital, with a hospital recovery period of at least one week, and only a one-way flight for Kara, Matt, and Luke booked. Many follow-up visits will be necessary to ensure proper healing and progress. Of course, the best scenario is successful surgery where Luke no longer needs his trach tube. This would one day allow him to talk clearly and comfortably, swim for the first time, and be a full participant in activities with cousins and family. However, Luke is one-of-a-kind in every sense of the phrase and a medical mystery to most, so there is no guarantee of anything and there will most likely be additional surgeries down the road.

Luke is a fighter. He’s smart, playful, and has the kindest heart that lights up any room he enters. His family – his parents Kara and Matt, his siblings Riley, his twin Lucy, and Kaylie, all his cousins, grandparents, uncles, and aunts; his school friends, his teacher, his nurse – adore him beyond measure. You cannot help but just love the kid when you meet him. Despite the love and strength that surround him, the emotional and financial toll of his medical journey is undeniable.

He has had 5 eyelid surgeries, strabismus surgery, and a dozen bronchoscopies. At 4 years old, he puts his arm out to have blood drawn and has had anesthesia more than most have in their life.

Each trip to Philly or Cincy (or Delaware or upstate NY) has Kara and Matt missing family, home, and work. Air travel, rental cars, hotels, meals, and Matt missing work have been fairly substantial. However, their ultimate goal is to give Luke the chance to live his best life. Even with the best outcome of the LTR surgery, physical challenges will remain. Anyone that knows Luke indeed knows he is pure LOVE. He is smart, playful, and is best at warming hearts.

Thank you for reading about Luke and sending a prayer, word of encouragement, a share of this message, or a donation his way. This money will ONLY be used for Luke’s medical expenses, and if someday he is trache-free, Kara & Matt will donate anything left over to another young patient of Cincinnati Children’s.