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Sunday, September 7, 2014

little boy, great big smile - a cleft lip story - Amanda Rapier

I am grateful that Amanda Rapier reached out to me to share her story of strength, courage and determination. A high school classmate of mine, I've come to learn that she's a super momma that's for sure! Such an amazing advocate for her son, Owen, (of course I LOVE the name, as it's my son's name, too!), I admire Amanda's dedication to making her son's life as fun and normal as any little guy his age. 

She and some other Maine moms started a fantastic support group and organization for other moms with children with facial disfigurement. I hope that at least one mom reads this post and knows she is not alone, that her child is absolutely adorable, and that differences are what make our world amazing. 

Thank you, Amanda. I'm brought to tears while editing this. I'm so happy to be a part of your mission to help other families in Maine. 




Images from Amanda Rapier



Here's my story:
         I found out at my 20 week ultrasound that my baby would have a unilateral cleft lip and palate( A cleft lip and palate is an opening in the lip and roof of the mouth that occurs during pregnancy). 

It was sort of a surreal experience.

I was at the hospital and during my ultrasound, the technician asked me to step out and wait in the waiting room after we got a peek at the baby and she announced the gender- a boy. I waited anxiously for about 20 minutes in the waiting room and then the technician came back in and told me that I could go home. I thought that was kind of weird but was bubbling with excitement to tell our family that we would be having a boy! Later that night, I got a call from the hospital telling me that my son had a cleft lip and palate and also a dark spot on his heart, which indicated a serious heart condition. 

They referred me to the cleft lip and palate team (a team of doctors who specialize in treating this condition) at Maine Medical Center. At one point during my pregnancy, I was told that my son may not live after birth for fear that the cleft lip and palate and heart defect indicated a fatal genetic condition called trisomy 13. 

After an eventful and complicated pregnancy (due to high blood pressure), I delivered Owen at 36 weeks. He weighed 4 lbs, 2 oz. He was my tiny miracle: he was born with a cleft lip and palate but the serious heart condition that they told me he would have was non-existent!



           Fast forward eight and a half years, and I have a perfectly healthy, fun loving, smart, and very sweet almost third grader! 

Owen has endured 4 surgeries- a lip surgery at 6 months, another lip and palate surgery at 13 months, a palate surgery at 2 years and a fistula repair (his palate re-opened) at 7 years. He will have the fifth surgery next Spring. This will be a bone graft so that later on he can have a tooth put in in the space that is where his cleft is. 

He has seen numerous doctors, had speech therapy, and a horrible case of pneumonia that sent him in intensive care with chest tubes at Maine Med for weeks. 


Throughout everything, Owen has been incredibly strong and resilient. He has taught me how to be strong in the face of adversity and has sparked a need to advocate for him and other children who have gone through this.  

I've tried to help him advocate for himself as well and I've really stressed the understanding that it's okay to be different. On a recent play date with a friend, Owen matter- of- factly told his friend "I was born with a cleft lip and palate. I had a hole in my mouth, want to see?" as he opens his mouth to show his friend. His friend said, "Oh, cool!". His classmates have been wonderful to him- even sending him cards and pictures when he was in the hospital last year for a palate repair. 


          After Owen was born and I finally got the hang of taking care of a baby with a cleft lip and palate (feeding can be complicated), I felt the need to meet other mothers who were going through the same thing. I searched the internet but found very little about any groups or networks in the area. I had an idea at that moment and knew that a cleft lip and palate network in Maine needed to be created but I didn't know where to start.  

A few years later, I met another mom who was trying to do the same thing! She was instrumental in getting the project started and with the help of the coordinator of the Cleft Lip and Palate clinic at Maine Med and a few other moms of children with cleft lip and palate, a group was created. 

Our organization is called Facing Maine and our goal is to spread awareness, education, advocacy, and support for families of children with facial disfigurement in Maine. We have a Facebook support group which currently has 53 members and we plan family get-togethers so that families can meet. We are hoping to reach non-profit status and start raising money for our cause in the future. We welcome any families of children with a facial disfigurement or conditions to check out our website, join our Facebook support group, and attend our events. 

1. How did you first feel when you found out your child had a cleft lip and palate? What were some of your worries, fears, concerns in hearing this?
When I first heard about Owen's cleft lip and palate, I felt extremely anxious, scared, and alone. I had never heard of this diagnosis and didn't know much about it. I wanted the best for my little boy and worried that it would affect his development. I did a ton of research after I found out, which, coupled with the added fear of my son having a heart condition, made me extremely stressed as there is SO much information( which is not always accurate and can be very negative). 

I was also scared that I may have somehow caused this to happen to him but then learned that a cleft lip and palate can occur spontaneously and the cause is often unknown. 

2. What is your advice to someone who has a child with these conditions? 
You are not alone! There are many other families in Maine who are experiencing the same thing. Reach out to groups like Facing Maine if you need support or advice and ask your families to help.  It can be a tough job taking care of a baby with a cleft but there are lots of resources to help. 

3. How has this experience made you stronger, or a better mother? 
Having Owen has made me a strong mother because I have had to learn not only to advocate for him throughout his procedures and experiences but also to advocate for myself when I needed support.  Owen and I have such a strong bond. I know that we can get through anything!

4. What do you hope the world learns about kids with cleft lips and palates? 
That they are incredibly resilient but can also be sensitive to the fact that the outside world may not understand what a cleft lip and palate is. It's important to encourage a child with a cleft lip and palate to educate others and to practice their responses when they are potentially faced with questions that their peers or even adults might ask. 

5. What do you hope your child knows about himself, regardless of this cleft lip and palate? 

I want Owen to know that he is loved beyond measure. I am so proud of the person he has become and that he has been an inspiration to me. 

1 comment:

  1. Amanda, I had Owen at the York Parks and Rec's summer camp as well as the summer soccer league. What a truly wonderful kiddo who always brought smiles and laughter to our days at camp! I wish him best of luck with his surgery this spring and want to thank you for sharing such an inspiring story!

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