Hank’s Type 1 Cleft Journey
By Emily Cain
Hank was born at 39 weeks with no complications at birth besides a tongue tie. Hank's tongue tie was clipped one day after his birth, and then we went home. I had extra fluid during pregnancy called polyhydramnios, but other than that, I had a perfect pregnancy.
Hank's first week of life was normal other than I noticed he could not correctly breastfeed. I took my son to a pediatric dentist and learned Hank also had a lip tie. The lip tie was lasered.
When Hank was about nine days old, I noticed he had retractions. I thought I was overreacting, but I wanted to make sure he was ok. My husband and I drove to a medical facility, and the retractions were chalked up to a respiratory virus. The doctors wanted to make sure Hank was ok as a chest x-ray showed he had a bit of hazy lungs. The doctors were not sure, so they transferred us to another facility. Now looking back, I assume his hazy lungs were due to aspiration; his food was going into his lungs.
At the second medical facility, doctors first thought Hank was fine and almost let us go home. When Hank's oxygen saturations dropped to 88, they had no choice but to admit him to the general floor. The next two days Hank ate like he normally did, which was not much, and he only took a couple of ounces at a time. We tried switching formulas and he still was not a great eater.
At the time, I was more concerned with his breathing. Hank ended up needing high flow oxygen for the next three weeks in the pediatric intensive care unit. Due to Hank being on high flow oxygen, the hospital placed a feeding tube, because it is dangerous to drink a bottle with flow that high.
For almost two weeks the doctors could not figure out why he needed oxygen. After many x-rays and other procedures, an ENT was called in. The ENT scoped Hank's nose, found a cyst and removed it. Hank successfully weaned off high flow oxygen after that and here is where our life changed. The hospital did a swallow study before they would allow us to go home.
The swallow study showed aspiration and deep laryngeal penetration. The feeding therapist taught me how to make Hank’s bottles with honey thick Gelmix and we were sent on our way. Back at home, the next week was an absolute nightmare. Hank would sleep instead of drinking a bottle which I thought was weird since he was a month old. Every bottle Hank would drink would only be an ounce at a time. My three other sons always drank 3-4 ounces by four weeks old, so I knew something was off.
I ended up taking Hank to the pediatrician and she could not help me. She just told me to keep feeding him and push his tongue down. The pediatrician did push for a swallow study, and we waited weeks to do that. The swallow study again showed Hank was aspirating and needed honey thick Gelmix.
After a few weeks, Hank had a follow-up with the pulmonologist due to his hazy initial lung x-ray. The pulmonologist was the first person who truly listened to me. When I got to his office Hank was crying, and as usual, would not eat. Hank had dropped from the 88th percentile to the 3rd percentile. I kept telling the pulmonologist something was not right with my son because I had fed my three other boys and never had so many issues.
Dr. Copenhaver, the pulmonologist, was the first person to point Hank in the right direction. Dr. Copenhaver called the feeding program at Children’s Health Specialty Center in Dallas and got us in within the next few weeks. After that, Hank was accepted into feeding therapy twice a week and did VitalStim each session. We met an amazing feeding therapist named Megan, and she has continued to help us on our journey.
During all this Hank was still only drinking 1-2 ounces and he was almost three months old. I thought this cannot be right and Dr. Copenhaver recommended doing another swallow study. Hank was not gaining weight, he was sleeping all the time, and hardly drank 1-2 ounces. I tried every formula and every bottle. I felt very hopeless during this time.
The next swallow study showed no aspiration if Hank was side lying while feeding, using an ultra-preemie nipple and without thickener. I went home and tried to feed Hank without Gelmix as they recommended. This was a big mistake. Hank was choking and coughing. His eyes were red, and he ended up refusing the bottle. I went back to thickening his bottles.
The next time we saw the feeding therapist she recommended we wean Hank off thickener so for weeks we tried and got Hank to nectar thick Gelmix. If the bottles were even remotely thin, Hank would cough and choke. I was disappointed that Hank passed his third swallow study but could not get off Gelmix. I had a gut feeling something was still not right.
We ended up going back to the ENT who had removed Hank's cyst from his nose. The ENT said Hank did not have eating problems because of his throat even though I had mentioned all the symptoms of a laryngeal cleft. I had googled every symptom out of desperation and Hank matched every symptom for laryngeal cleft type 1. The ENT told me he would check Hank’s throat when he was one year old. Hank was already losing weight and sleeping a lot, so I took what he said with a grain of salt and moved on.
I looked for another doctor to help. This time I took Hank to a GI doctor hoping they could provide some answers. The GI doctor told me that Hank was just crying because of colic and told me to put him in the closet if I could not handle his crying. I tried to explain to him that Hank was starving to death, but he would not listen.
Truly desperate to help my baby, I again searched for another doctor. I began googling adult ENTs at this point because I figured it was Hank's throat. I finally found an adult ENT who was so helpful. She said she could not check Hank's throat until he was six months old, but she knew someone at Children’s Health that was an ENT and referred me to their office. The next day I got a call and Hank was seen within the next few weeks.
When I got to the ENT’s office, Hank was once again screaming and crying after taking one sip of formula. I knew he was hungry, but he acted like he could not eat which was weird to me. I showed them how Hank was acting and the speech therapist there suggested I see their aerodigestive team. The aerodigestive team saw Hank the next Monday and two weeks later he had a triple scope.
During the triple scope, the GI doctor and pulmonologist did not find anything. The ENT, Dr. Chorney, found a laryngeal cleft type 1. Due to Hank's feeding issues, the ENT filled Hank’s cleft with filler. I was sad that he had this condition, but I was thankful for a diagnosis because we had been to so many doctors at this point trying to help our baby. Hank continued to heal and go to feeding therapy. He started drinking 3-5 ounces each feeding. I was so thankful! This lasted 3-4 weeks. Hank even had a swallow study once again and he passed it.
The feeding therapist and I tried to feed Hank after the swallow study together and he refused to eat without Gelmix. The week after that Hank started refusing to eat again all together and would not eat more than 1-2 ounces at six months old. Back to Dr. Chorney we went. I am so beyond grateful that they always had a listening ear instead of ignoring me.
Because Hank was losing weight for a week straight and would not eat, he was admitted to the hospital. After four days in the hospital, they did surgery on Hank and permanently fixed his laryngeal cleft type 1 with a stitch repair. During the surgery they also found what looked like aspiration in Hank's throat. The ENT explained this was why he could not get off Gelmix every time I tried after the swallow studies.
Now that the surgery has healed, Hank regularly drinks 4-5 ounces each feeding. Hank’s weight has gone from the 3rd percentile to the 11th percentile. He still struggles with reflux, but other than that, Hank does not cry after a few sips as he previously did when he drank a bottle. He is happier and does tummy time regularly now.
Before the repair, I could not even set Hank down at any point during the day because he was starving and upset but refused to eat. He is finally moving up on the height chart and is in the 62nd percentile for height. I am praying and hoping that Hank continues to have such positive feeding experiences because the first six months of his life were very tough for him. He was unhappy and never ate or grew correctly.
I am very thankful for every doctor we met whether they were helpful or not. The doctors who did not listen to me taught me to advocate for my son no matter what. The helpful ones taught me that you should always go with your gut feeling if you believe something is wrong with your child. I am forever thankful for Dr. Chorney, who took the time to listen to me and help my son. Because of Dr. Chorney, Hank is no longer failure to thrive and is on the road to being a happy, healthy baby.