“My son Slayton was born with a unilateral cleft lip and cleft palate. He was born missing his hard palate. He is now one and has been through both of his surgeries to correct his cleft lip and palate, but it definitely has not been easy.
“I found out my son was going to have a cleft lip when I was 18 weeks pregnant. I was, of course, lost, but I knew no matter what, we were going to get through it. We were referred to a high-risk doctor, where we had a monthly ultrasound to stay up to date with his growth. We never knew the extent of the cleft lip, but we knew it was there. We also were not sure if he had cleft palate or not.
“Slayton was born at 40 weeks and 5 days on June 15, 2021. We were in the hospital for 5 days while trying to figure out how to feed him with the extent of his cleft. Once we were home, we met with his surgeon at 2 weeks old, and we began taping. We also started seeing his orthodontist the following week, where he got his impression for his NAM device. His feedings were taking an hour-plus in one sitting because he could not get any type of suction around his bottle.
“The following week after his orthodontist appointment, we started seeing Slayton’s cleft team at LeBonheur Children’s Hospital. He has a speech pathologist and a dietitian. While wearing the NAM and weekly appointments to get it readjusted, we were struggling with gaining weight. Slayton was in the category of ‘failure to thrive.’ He was also starting to aspirate while eating, so we had to have a swallow study that showed his milk was not going in the correct place. We had to start putting thickener in his bottle, and he had to be on acid reflux medicine due to silent reflux.
“Nothing about our journey has been easy, but Slayton is the strongest little guy! He had his cleft lip surgery in November 2021. His cleft team calls him ‘the 1%.’ Slayton did not care a thing about drinking after surgery, and we were in the hospital for a week. After many different attempts to get him to eat, he finally took to a 1 ml syringe. We had to line up 200-plus syringes to feed him. It was an experience, but he was eating, finally. Once we got home, he took to the teether feeder and finally started to become himself again. After that surgery, we had 6 months to prepare ourselves for his palate surgery, which was the day before his 1st birthday, June 14, 2022.
“The entire experience was scary, overwhelming, heartbreaking, and more. Slayton’s surgery took 4-plus hours. His surgeon said it was the widest palate she had ever worked with. Remember… ‘the 1%.’ After hours of waiting to see him, he was finally in recovery, and we still weren’t called back to see him. We knew something had happened. After two hours of waiting to go back to see him, his surgeon came out to talk to us and told us that after they took the breathing tube out, he stopped breathing. That was not at all what I was expecting, and I could do nothing but cry. After finally getting back to recovery to see him, he had to be on continuous oxygen because he couldn’t keep it up. Talk about overwhelming and the most helpless feeling.
“After 4 days in the hospital, he still wouldn’t take anything by mouth. We tried everything! On day 8, his entire team decided to put in an NG tube. Once again, something they have never had to do in 20-plus years of practice. Slayton was weak and pale. He had no energy to sit up or even smile. We were on day 10 in the hospital with strictly NG feedings, and I requested to go home. I needed my son to be in his own environment in his own bed.
“We have been home 3 days now, and he is finally starting to be himself. He has finally started smiling and laughing again. He is still strictly on NG feedings and is refusing anything by mouth. But we are going one step at a time. Slayton truly is a 1%, and I envy his strength. He has been through so much in this first year of his life. His story is different, but it’s ours. I’m so proud to be by his side through it all.”
-Morgan, Slayton’s Mom