Sam's Laryngeal Cleft Story

Minnesota, USA  |  September 2025

By Jamie Grant

My husband and I had three children before our surprise son, Sam, came along in 2016. 

Without any previous known complications, upon birth, Sam was immediately rushed to the NICU. Sam was initially diagnosed with a tracheoesophageal fistula and Down syndrome. We were told he’d have surgery and go home in a couple of weeks. Those few weeks turned into over seven, very bumpy months. 

We later learned that our son did not have a TE fistula, but rather long gap esophageal atresia. Repairing the esophageal atresia would have to wait until our baby was three months old.   

Sam had his first surgery at four days old, a G-tube for feeding. Things were going relatively well until he was about a month and a half old. He was scheduled to have a procedure, but unfortunately surgery was canceled as Sam went into cardiac arrest. It was unclear at the time why this happened. 

About three weeks later, Sam went into cardiac arrest again needing more than five minutes of chest compressions. Less than 24 hours later, it happened a third time, with more than 10 minutes of chest compressions. 

The following day Sam was quickly diagnosed with an even more rare birth defect, a hole in his airway, a type 2 laryngeal cleft. The original ENT said it was closer to a type 3, but not quite a type 3. Sam was swallowing his secretions into his lungs and essentially drowning himself. The doctors were pretty confident Sam aspirating his secretions led to the cardiac arrests. Five days after Sam’s third cardiac arrest, he was given a tracheostomy (breathing tube). 

At three months old, Sam was scheduled to have his upper and lower esophagus connected. It was the surgery we had been waiting for since he was born. Everyone thought the surgery would be successful. Unfortunately, it wasn’t. 

His doctors needed to go with a relatively new and radical surgical process which left Sam in a medically induced coma for 34 days. Through this series of surgeries, Sam laid completely still on his stomach for most of the sedation period. It took two, sometimes, three nurses to move his tiny head from side to side every four hours. If he even flinched, they quickly gave him more sedation meds. It took Sam almost four months to wean off the many heavy meds he was on. Most did not think Sam would make it home. 

Finally, after seven months, we took Sam home for the very first time. 

We are incredibly grateful for the care Sam has received. For the most part, Sam is followed by the same team who have cared for him since he was a baby. Based on Sam’s complexities, we have changed a few doctors over the years. 

Sam had two unsuccessful laryngeal cleft repair surgeries in Minnesota. He was then referred to a hospital in Ohio where his cleft was successfully repaired at age 5. The surgeon told us when Sam had his cleft repaired that it would be a true miracle if it worked because of all the complications Sam faced after the surgery. Next he shared, “But I do believe in miracles.” 

The care in Ohio was top notch. The Aerodigestive Center did a thorough job assessing Sam and giving us their recommendations. During that time, Sam had a PICC line and was on TPN for about eight months.

When Sam was 7 years old he was able to get decannulated (tracheostomy removed) following the successful laryngeal cleft repair in Ohio. Because of the relationship between Sam’s doctor in Minnesota and the doctors in Ohio, we were able to stay home for check-ups. This was a huge help for us because we had young kids at home and traveling back and forth from Ohio was a heavy financial burden. 

At 8 years old, Sam is still very medically complicated and has undergone close to 80 surgeries and procedures in Minnesota and in Ohio, with more to come. He is 100 percent dependent on a feeding tube. Throughout his life, Sam has had a lot of GI complications. He initially had a G-tube, then later a GJ-tube. Sam was having episodes of intussusception, and doctors believed the tip of the J-tube was causing the issue. Now Sam is back to a G-tube. Today, he’s currently healthy and thriving at home with us and his home care nurses, always keeping his medical team and us on our toes. He’s an incredible little boy who continues to bless and win the hearts of many with his infectious smile and captivating personality. 

This is only a glimpse into the short life of our Superman and his medical journey. Although there are many hard days, we are grateful for everyday we get with him and the people we have met along the way. 

To those of you who are just beginning this trek, I can’t promise things will get easier, but I can tell you that you’ll settle into your routine and norm. I can tell you that finding gratitude each day will get you to the next. I can tell you that your gratitude will likely look a lot different than others in your life and that is okay. I can tell you when you find the few people in your life that don’t try to ‘get it’ because they know they can’t, keep them close. I can tell you the less you expect people to understand, the less offended you will be, and in turn, the more peace you will have. 

Most of all, I want you to know you can do hard things. You are strong and you are capable. You’ve got this!