Guest Blogger, Akayla Edwards from A Special Life
Based on True Events
The content is NOT intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your pediatrician or other qualified health provider with any questions you may have regarding a medical condition.
Cleft Lip and Palate -A Mother's Introduction
What is a cleft lip and palate?
When a baby is developing in their mother’s womb, the right and left side of their face are separate at first. At the early stages of about 4-12 weeks, the face starts to form and come together. In some cases, the mouth doesn’t come together all the way, so it forms a little gap in the lip or the palate. When this happens, it’s called a cleft lip or cleft palate! Sometimes, they have both. It’s one of the most common birth defects in the world. 1 in 700 babies born in the US are born with a cleft lip or palate. In most cases, it’s just random and there is no significant reason why it happens. It is usually not the mother’s fault. Doctors are still studying and trying to find the cause of this. Some causes could be the environment, or if the mother is smoking or doing drugs. Honestly, it just happens sometimes and it’s a huge bummer! There are many different kinds of clefts and the severity of the cleft varies from each baby. For more details about this diagnoses, please feel free to watch this Youtube video that I made.
My son, Levi, was born with a bilateral cleft lip and a severe cleft of the soft and hard palate as well as an alveolar cleft (Gum line). This came as a huge shock for my husband and I when we found out at my 20 week ultrasound appointment because we have no history of this defect on either side of our families. We were pretty clueless and didn’t know what to expect! As soon as he was born, all our worries and fear went away for at least a short time. We have been so lucky with how well Levi and our family have been taken care of thanks to so many helpful family members and friends and also the amazing care of our cleft team. They have helped us out with every step of the way.
Depending on where you live, your cleft team and surgeon will make a plan with you to decide which medical and surgical route to take that will be best for the child. The main concerns for a cleft child up until they are about 18 years old, is their breathing, eating, and speech. Some kids have to go through several different surgeries, and others only need a couple in their lifetime. In our case, Levi got his lip repair at 3 months, then the soft palate repair at 13 months, and next year he will have the hard palate repaired when he’s 3 years old.
Levi has had to deal with a few other things along the way so total he’s had 6 surgeries, but not all of them have been cleft related. This is just the start of his journey, and he will need a lot more done as he gets older. We have been so happy with the progress he’s made so far.
There are many different options available to best help these kids get the care that they need. Many babies born with a bilateral cleft lip or a super wide unilateral cleft lip need what they call a “NAM” and taping to help prepare the lip for the repair. See this video for more details and explanation. This process is very frustrating and annoying for your child and they don’t usually like it, but it makes such a huge difference for their repair! It basically helps bring the skin closer together to make less visible scarring and make it easier for the surgeon to stitch all the pieces together.
Levi had to wear a NAM for about 3 months and he hated it. He was also on oxygen due to sleep apnea, so I used to put the hand covers or socks on his hands so he couldn’t hurt himself. It didn’t always work though. He did eventually start to figure out how to take them off. I wish I had the opportunity to use the CozeeCoo™ baby swaddle while I was going through all of this! It would’ve saved me! Also, when Levi was done wearing the NAM and had his lip repair at 3 months, he had to wear arm restraints for a couple weeks so he wouldn’t yank at his stitches. I know he would’ve enjoyed wearing the CozeeCoo™ so much more and it would’ve given me some peace of mind and less guilt making him miserable with the arm restraints.
This journey is definitely not an easy one, and it seems so unfair that your little one has to go through so much. My Levi is now 2 years old and doing phenomenal! The first 6 months-1 year was the hardest. Once we got him in a good stable place, he has been progressing more and faster as time has gone by.
It’s been a long and exhausting couple years. It’s been endless doctor’s appointments and surgeries, and at times has seemed like it’s never going to end. Feeding has been one of the biggest struggles, and my son had to have a g-tube for a year and a half until he was comfortable enough eating by himself. Another big issue has been speech, so he has been in speech therapy since he was 18 months old. Slowly but surely, we are getting through it!
Kids that are born different are so special and inspiring. I still can’t believe how unbelievably strong and resilient my son is. I wouldn’t wish this life on anyone, but I also wouldn’t change this experience or my son for anything in the world either. I’ve learned so much so far, and I know it’s all happened for a reason.
I wish all of you luck who are going through this. I am here for you and with you! Please feel free to message me if you have any questions or need to talk! I have a YouTube channel and other pages that include my experiences and tips and tricks I’ve learned along the way since my son was born if you’re interested! Look below for the links and other resources for help and support!
A Special Life Youtube Channel
A Facebook Cleft Lip and Palate Support Group
A Facebook Cleft Mom Support Group