Canyon's Cleft

Hello and welcome to our story and our journey! Our hope and mission for Canyonscleft.org is to share our journey, help families with children who are cleft affected, and bring awareness about cleft.  

We are the Worthens, Ty, Shelbie, and Canyon. In July 2021 at our anatomy scan we found out that Canyon would be born with a Bilateral Cleft lip and palate. To brand new parents it was news we did not expect to hear. I had done everything right. Had a great diet, light exercise, was taking prenatal vitamins before ever conceiving, no drinking, and no drugs. It was a complete shock to both of us. We never lost our faith, and we trusted Gods plan for our family.

After grieving what we thought our Canyon would look like we started doing our research. Did you know that Utah is one of the top states in the US for cleft? Fortunately, with Utah being one of the biggest states for Cleft, we had access to a lot of knowledge. We met with three Cleft teams and started to make a very important decision that would affect Canyon for the rest of his life. As we were gaining knowledge about what our path was going to look like, we made the decision to go with Dr. Devan Griner’s team. We left that appointment feeling loved, supported, and heard.

In October of 2021 Canyon made his dramatic entrance into the world with an emergency C-Section at 37 weeks. We think he just wanted to steal his dad’s birthday. I had learned during my c section that Canyon had been without fluid for almost two weeks. Technically, I should have been delivering a still born but God saved my baby! God protected my baby, and it was right then I learned he was a miracle and that he was going to change the world.

Canyons first three weeks of his life were spent in the NICU.  He had failed his hearing test which is common with cleft babies. He had so many tests done to make sure he was ok. During the testing we learned Canyon’s cleft was an isolated cleft. Meaning there was no cause or syndrome associated with it. Canyon had a very hard time eating and was on a feeding tube. Not only that, but he was also losing weight.  Babies with cleft tend to burn more calories while eating. After a lot of hours of practicing the bottle (which is a specialty bottle) we were finally able to go home (on a feeding tube).  Not only did we have the struggles every new parent had, but we also had additional challenges as well.

Canyon’s feedings took about an hour to an hour and half thru the tube. With having to feed every three hours that meant we were only getting two hours of sleep in between feedings if we were lucky. Finally, after lots of practice, patiences, prayers, and hard work Canyon got the bottle down full time and was off the feeding tube completely in a month.

As he continued to grow, we started making our plans for the first three surgeries. The first surgery took place January 19th, 2022 were a Latham device was surgically placed to start to pull his premaxilla back into place. He stayed overnight and we were discharged the following day. Unfortunately, after the device was placed Canyon did not handle the pain very well. We ended up spending 7 days in the hospital to control pain and relearn how to eat.

After many hard conversations with God, I had asked the doctors if we could try formula. (I was exclusively pumping, and Canyon had only had my breast milk). He started taking every bottle and we were finally discharged. The Latham device had changed his taste. For the next three weeks we were driving three hours round trip multiple times a week for fittings, tightening of the chains, and checkups.

Before we knew it his forever smile surgery was here. February 17th, 2022 Canyon underwent a 5 and a half-hour surgery to get his forever smile along with tubes placed in his ears. It was the most difficult six hours of our lives just anxiously waiting. But after seeing him with his beautiful, swollen, bloody, forever smile, we fell in love all over again.

 We knew it was going to be a process. Canyon was going to have to learn to eat again and breathe again. It was like having horrible flash backs to when the Latham was placed. Thankfully, God saw us thru again and Canyon came home 2 days after the operation. He started to gain his strength back and came off all medication in just 7 days.

Oh, we should mention, medication is Tylenol and Motrin only. Thankfully we got a good 8 month break from surgeries and were able to focus on therapies.

Food and physical therapies were the first he started with. Because of all the time he had spent in a hospital bassinet he was very stiff. He was also getting to the point were he was going to be starting solid foods. His palate had not been repaired yet. Imagine not having a roof at the top of your mouth and trying to eat.

C was thriving during these months! He was eating soft foods like a champ and was catching up with his gross motor skills. We had also learned that the tubes were working, and Canyon finally passed his hearing test! The rest of the winter months were hard being in and out of the hospital for other things (RSV, Bronchitis, and Flus). We were finally finding our normal again when his first birthday hit.

We knew that all the worry and struggles we had faced in the winter were coming back. On October 19th, 2022 Canyon went for his third surgery, the palate repair. This was supposed to be the worst surgery thus far into the journey. He was back in the OR for a little over six hours.

We had noticed after the surgery a rash had developed around Canyon’s cheeks and some blisters in his mouth and tongue. Poor baby love had broken out into canker sores from the surgery and a stress rash. The sores were making it very hard for Canyon to eat and drink. Thankfully with medication it went away, and Canyon was thriving at his feedings. He was only allowed liquids for two weeks and was placed in arm restraints called “No-Nos.” These help keep babies from putting anything in their mouth. We needed his palate to heal up and not have anything mess with the stitches.

It was a rough two weeks with those No-Nos and the liquid diet. At the 2-week appointment we learned everything looked beautiful and we were released from the No-Nos and the liquid diet. Our goal was to just make it to Christmas so we could go back to normal.

By the time Christmas had come, Canyon had his first “real” food and was even able to enjoy a Christmas cookie. From then, we have been in speech therapy on a weekly basis. We knew it would take a while for the scar tissue to break up so he could gain muscle control.

In April 2023 on a trip to St. George Utah with our dear friends, Canyon used a straw for the first time. This was like winning the Olympics! It takes cleft kids so long to gain suction and to learn to form a seal around a straw. But there he was at 18 months old, in a chicken diner, drinking from the straw!! We had never been so proud in all our lives! Something that we take for granted everyday Canyon worked so hard for. We continue with therapies and we are happy to say Canyon is finding his voice.

While words are still few and far between, we hear him making sounds we never thought he would make. We had our team meeting in November 2023 and learned his hearing is still great. His palate is wide and long and will probably not need the palate lengthening surgery.

We also learned that Canyon has every baby tooth. This is not common for cleft kids. They usually are missing teeth where their cleft was. We are unsure how viable his adult teeth will be, but we will cross that bridge when we get there.

His next surgery will be around first grade for a functional rhinoplasty and potentially bone grafting. We still have a very long way to go. Cleft is not something you can fix and be done with. It is a lifelong journey that we can’t wait to share it with y’all! We are the Worthen’s, and our baby love Canyon is 1 in 700. 

What caused Canyon’s Cleft?

Honestly, we are not sure. With it being an isolated cleft God is the only one who knows why Canyon had a Bilateral Cleft.

Did you do something in your pregnancy to cause his cleft?

No. I was already on prenatal’s when I got pregnant. Most clefts are either genetics or a lack of folate.

I just found out a loved one is expecting a child with cleft. What should I say?

Great question! It is always tricky to know what to say to a loved one when they find out their new addition is going to have a cleft. Remember, a cleft does not define this child. This child was fearfully and wonderfully made. Let the parents know you are there to support them. Once the baby arrives compliment their eyes, their strength, and most of all their smile! Chances are you will be in love with the wide smile.

What surgical team does Canyon use?

Canyon sees Dr. Deven Griner and his team located in Provo Utah.

What can I get a new family who has a baby with Cleft?

Babies with cleft do need specialty bottles. Dr Brown Bottles have a specialty bottle kit that is great! Most cleft babies spit up a-lot. Think burp rags, bibs, and even rash cream. Also a Warmie! These things were life savers for us when it came to surgeries.

I just found out I am expecting a baby with cleft. What questions should I ask the surgeon?

It is always a whirl wind trying to figure out what you should know. Some basic questions to start off the conversation:

What is the timeline for surgeries?

What will your team be able to assist with during our journey? (Therapies, feedings, hospital support, ENT, and so on).

Are there any special requirements that need to be met before surgeries? (specifically weight requirements).

What method will you practice on my babies palate? (Have your surgeon explain their process and procedures in depth. Ask any questions you may have during this discussion).

What does recovery look like for each surgery?

Depending on the palate, will we use the NAM device, taping, or a Latham?

What therapies will my little one need pre and post surgeries?

Will insurance cover the cost of surgeries?

Are there any foundations I can look into to help with financial assistance?

Email: Canyonscleft@gmail.com