Tanner’s Type 1 Cleft Journey
By Kristin Orr
Tanner was born just outside of Knoxville, TN, in July of 2013. He was a beautiful, perfect, healthy baby...or so we thought.
Immediately after Tanner was born he began coughing and choking with feeds. Like most parents, we went down the list of all the most common reasons this might be happening. “The breast milk is coming out too fast, his latch must not be good, he doesn’t do well with this bottle/nipple, his reflux is irritating his throat.” His breathing would change and he would start to sound “noisy.”
After several weeks, doctors visits, and emergency department visits, we were exhausted and defeated. It was all chalked up to him being congested. One of the clinic pediatricians listened to Tanner and gave us a handout on laryngomalacia and told us he would outgrow it.
Tanner couldn’t tolerate being laid down flat for diaper changes or to sleep. His reflux would come up and he would begin to cough, choke, and gasp for air. He had to sleep elevated in his swing right next to our bed. By 2 months old, we were told by our pediatrician to try and start puréed baby food to help with the reflux. This ultimately landed us in the emergency department yet again. This time Tanner had almost completely stopped breathing and started to turn blue at home.
Tanner began refusing to eat at all during the day and would only take a bottle when he was asleep. That’s when we knew something was very wrong. We started thickening his bottles with rice cereal against doctor's advice and we noticed a big improvement in his appetite and aversion to eating. His coughing and choking decreased a lot and he seemed to be able to swallow better. We started seeing GI and pulmonology for his feeding and breathing issues.
The following 9 months were a complete nightmare with constant testing, chest infections, x-rays, hospitalizations, GI/pulmonary scopes, speech therapy appointments, and cardiology appointments for a suspected aberrant right subclavian artery that was thought to wrap around his trachea (seen in a swallow study and which ultimately didn’t exist). He had only been diagnosed with EOE, asthma, GERD, food allergies, and laryngomalacia (via our pediatrician). We had no real answers for why Tanner was aspirating.
At one year of age, the noisy breathing was supposed to be better, but it had not improved. Plus, due to wheezing and constant pneumonia-like symptoms, he was unable to eat any food other than his Elecare thickened with Beechnut rice cereal. Anytime he would start teething and produce more saliva, his breathing and wheezing would land us in the emergency department or pulmonary clinic.
If Tanner needed antibiotics, we would have to bypass the GI tract because if he took them orally it would cause his reflux to be uncontrollable to the point of coughing, gasping for air, wheezing, and extreme shortness of breath. On more than one occasion we did nonstop breathing treatments in the emergency department for hours. He almost went to the ICU twice because we couldn’t get his breathing under control.
During our final hospital stay in Knoxville, an ENT we had never met came into the room to insert a scope into Tanner’s nose while he was awake. The doctor was checking for a laryngeal cleft. The ENT assured us that Tanner didn’t have a laryngeal cleft and the doctors decided to send us home with the exact same plan as every time before. “Go to speech therapy and follow up with all his specialists,” they advised.
I cried. I bawled. I knew that every time we went to speech therapy for “feeding” he would end up in the hospital a few days later because of his breathing. Nothing was changing and we still had no answers.
I remember calling his pediatrician as we were driving out of the hospital parking garage and just pouring my heart out on their answering machine while tears streamed down my face. I couldn’t keep making my baby sick by taking their advice. Taking the thickener out of his bottles didn’t work. Feeding him how they recommended didn’t work. Nothing worked except for his finely tuned Elecare/Beechnut rice cereal mixed bottles. Feeding him ONLY that mixture was the only way we could keep his breathing under control.
After receiving that voicemail, our pediatrician decided to send us to the Cadet Aerodigestive Clinic at Vanderbilt. It was a 3 hour drive from where we lived, but we got more out of our first appointment with them than we had a year in Knoxville. Or at least it felt that way.
We left that first appointment with hope and confidence. We met with a large team of doctors, all at the same time, who asked about Tanner’s history from before he was even born. They asked questions, listened to us and gave us a lot of information. They advised us to just keep doing whatever we were doing to keep him healthy until we could get more answers.
The ENT, Dr. Christopher Wootten, assured us that if there was something anatomically wrong with our son they would find it, no matter how small. After all those sleepless nights and arguing with medical professionals in Knoxville, it finally felt so good knowing our son’s doctors at Vanderbilt were going to take care of him and give us real answers and solutions. They kept their promise and checked every box from every specialty and left nothing out.
Our next appointment was a triple scope where Dr. Wootten diagnosed Tanner as having a deep notch, which he eventually named a type 1 laryngeal cleft. A temporary filler was injected into the cleft. Dr. Wootten gave us reasonable expectations and said if it did work, it would only be for a certain amount of time. But also, it might not work. And if it didn’t, we would move onto other things.
Thankfully it worked! Only for four weeks...but those four weeks were so amazing and so emotional for my husband and myself. Tanner could drink thin liquids without coughing, choking, or wheezing! To see our child not struggling to breathe and just eating and drinking normally was the best feeling in the world.
Several months later Tanner was scheduled for a final stitch repair and Dr. Wootten again told us what to expect. He said it was possible that Tanner would be the sickest he had ever been in his whole life after the surgery. All kids tolerate it differently and there are sometimes complications, but thankfully, our son's surgery and recovery went perfectly.
That stitch repair was the best decision we ever made for our son. Our baby was drinking and eating normally and playing without being out of breath or sick for the first time in his life.
That 22-month-old baby boy that underwent a stitch repair for a type 1 laryngeal cleft in May of 2015 is now 11 years old and has never had another issue with swallowing or aspiration. He laughs, he eats, he breathes with ease, he sleeps lying flat just like every other kid. His favorite food is pizza and he can eat a large one all by himself. He’s a straight A student in all honors classes and dreams of becoming an architect one day.
We don’t know what Tanner’s future would have looked like if it wasn’t for Dr. Christopher Wootten and the Cadet Clinic at Vanderbilt. We firmly believe they saved his life.