National Cleft & Craniofacial Awareness & Prevention Month
Established by AmeriFace and cleftAdvocate
Cleft and craniofacial conditions affect thousands of infants, children, teens and adults in the United States each year. Some are born with congenital anomalies like cleft lip and palate, others with more complex, life-threatening craniofacial conditions.
July is National Cleft & Craniofacial Awareness Month. Being involved in the baby community and being a parent of little ones I’ve recently seen a lot of cases of cleft lip and cleft palate and have been moved by the strength these parents have had to endure for their children. I reached out to a local family; Mom and Dad to the gorgeous 6 month old Ava Yvonne…here’s what they had to say:
1. When did you find out that the baby you were carrying could possibly have a problem?
We went in to do the gender reveal appointment at 15 weeks were told we might have a possible cleft lip and palate and we were referred to a specialist at 20 weeks, who confirmed it.
2. How did you feel when you learned that your baby had a cleft?
Lindy “ Sad, angry, why me, angry at God, didn’t seem fair”. Eric Could this be my fault? What happened? Is this from my father? Angry for my wife to have to deal with this, unfair for us! Curious ?
3. What was the treatment plan?
We met with our cleft team in August 2016, to start going over our options. We learned about the NAM device & taping which Ava did from 1 to 4 months. The NAM device (Nasoalveolar Molding (NAM) is a nonsurgical method of reshaping the gums, lip and nose before cleft lip and palate surgery. The NAM appliance is a small removable device similar to an orthodontic retainer. It gradually applies pressure to lessen the severity of the cleft and improve the shape of the nose. The cleft lip is surgically repaired once the molding is completed, usually at about three to six months after birth.) At the end of 4 months we had her cleft lip repair surgery and at about 8 months to 1year she will be undergoing her cleft palate surgery.
4. How far along are you in the treatment plan? (how much therapy, how many surgeries)
1 surgery, cleft lip repair. No therapy yet, we will be starting speech therapy about one month after palate repair. For now we just continue wearing until the end of July.
5. What is left to complete the process?
Nose stent till the end of July, then around 8 months to a year cleft palate repair, then speech therapy and we have not looked past that just yet we are taking it one day at a time and one surgery at a time.
6. How do you feel now after the repair?
Relieved it’s over and that she healed as well as she did.
7. What has been the hardest part for you so far?
Eric: The taping, the nose stents. Having to upset Ava so much, it hurt a lot and I needed to be strong for Lindy I would say for Ava too but that girl is stronger than any of us even know. Lindy: Watching Ava having to go thru and overcome so many challenges and not being able to just be a baby. The emotional stress it’s caused on my husband and myself.
8. What has been most helpful?
Having a cleft team and multiple support groups.
9. Do you plan to tell her about her facial difference?
Yes. We will explain it to her when she is old enough to understand it or if/when she asks.
10. How will you explain it to her?
We have not thought that far yet to be honest.
11. Is there any organization that you support that is bringing awareness to babies born with clefts? Or a place that other parents just finding out their child has a cleft can go to for support and guidance?
Yes, cuddles for clefts and they send out care packages. The Facebook support group Cleft Mommies, http://www.cleftawarness.org.
Please share anything else that you feel will benefit others families going through this. Think about things you may have learned, seen or explored through your care experiences that may be relevant to others. Every experience is different so every story is different, the parts of your story that can most benefit others include how you’ve learned to deal with the challenges that having a child with a facial difference can pose and the perspectives you’ve gained throughout your experience.
There were multiple ways we processed our daily rituals of taping, multiple doctors appointments and the emotional stress of it all. You have to have perspective, you have a happy, healthy baby. The taping It is going to suck; get use to it. No, really, get all cozy with being uncomfortable, because that is going to be your new way of life for a little while, and it’s ok it does not last forever. You will fight with your significant other because the stress related to having a baby with Cleft and the financial strain is a lot. When arguments arise have them, but always ask for forgiveness, even if it’s not needed, it’s great to hear that apology, accept it and move on, you are each other’s team through this. You may feel isolated from friends because they may not understand, you may even feel isolated from your family. But you are not, they just may have never met anyone with a child that has a challenge. You will also really learn who your close friends are during this time and may lose many people, but will gain some stronger bonds with the ones you have left. You’re not going to want to do some of the taping or the nose stents, but try to every night, it’s a small discomfort that will help them for the rest of their lives. Give them what they deserve from you, but keep in mind you are human and sometimes you may not want to wake them just to cause them grief. A missed night here and there will not be the end of the world. Having a Cleft child or any child with a disability will change you. It will make you and them stronger people. The hands-on time it will take to tape them, feed them and soothe them is time you get to spend with your child; there is always a silver lining. Something that has helped us the most is laughter, look for the funny in any situation and don’t take anything too seriously, even yourself. Take it day by day, step by step and before you know it it will be over and you will be done and you will look back and see all you have accomplished together!
Thanks for giving us the opportunity to speak about our journey with Ava.
A big thank you to Eric and Lindy for sharing their Ava’s story. It’s never easy to deal with a situation like theirs and it makes my heart happy to see how far they’ve come. Their journey is not over, the road ahead for Miss Ava is still a long and hard one, but I just know that with the help of her family, her medical staff and the love and support of extended family and friends she will continue to do great.
To learn more about cleft lip and craniofacial deformities please visit Transforming Faces. They have a lot of information about what to do, how to care for and how to raise money and awareness so that families like Ava’s family can receive the help and support to get them through this challenging time.