Used with permission from the Cleft Palate Foundation

Cleft Awareness

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Categories Congenital Anomaly, Medical, Parenting, Special Needs

July is National Cleft and Craniofacial Awareness and Prevention Month! Find more #cleftawareness photos and stories on Facebook!

Sweet Pea’s Story

On a beautiful Colorado day in June of 2012, my heart was racing with anticipation and excitement. Our long awaited second child was about to make his entry into the world! When he was born, he made no sound because his cord was wrapped around his neck…twice. They removed it and within moments, he was screaming his head off. It was like music to my ears! Moments later, the doctor informed me that our son, our Sweet Pea, was born with a cleft palate. While we knew that this was a possibility as I was born with one as well, it was still a blow. I had walked this road, and I knew of the struggles that he would face.

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He was admitted to the NICU for observation due to his difficult delivery, but ended up staying for 3 days because he needed oxygen. He went home with oxygen, and remained on it for 13 weeks. During that time, feeding became a major issue. Our son was born without any of his soft palate, and was missing some of his hard palate as well. When people hear that we had cleft palates, they often say, “wow, you look so great!” While I appreciate the compliment, I realize that there is a lack of knowledge about clefts and choose to take these occurrences as a gift…an opportunity to raise awareness about clefts. For Sweet Pea and I, we do not have complete clefts, meaning our lips were not impacted by our cleft (see the bottom left picture in the chart below). While cosmetics were not an issue, feeding, breathing, speaking and orthodontics are.

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Because his cleft eliminated his entire soft palate, he was never able to latch to breastfeed. This was a huge blow to me and contributed to my post-partum depression. At only 6 weeks old, Sweet Pea was diagnosed with failure to thrive. We tried several methods of feeding him before we found the Haberman feeder. It is now called the Medela Special Needs Feeder and just one costs about $30. Obviously, the ability to feed our son was priceless, but it was very challenging. If it weren’t for this awesome bottle, our little man would have gotten a peg tube to feed him.

haberman

Many children have their cleft palates closed around 6 months of age…unless they have a craniofacial anomaly that impacts their airway. Our son also has Crouzon Syndrome, which makes his midface small, therefore making his airway small. Because of this, we had to wait until he was 12 months old before closing his palate. It was a long, difficult road, but well worth it!

A cleft palate repair typically takes about 3 hours…P’s took 5.  It was the longest day of my life.  When the craniofacial surgeon came out, he told us it was the most difficult repair he has ever done, but he believed it was successful. Two years later, I can attest to that claim. So far, P has had three surgeries, and the only surgery on the horizon is replacing his ear tubes. Today his biggest challenge is speech, but he has an amazing speech therapist and he is a resilient guy. We will continue to have him monitored by his Cleft/Craniofacial Team on a yearly basis. While we cannot predict his future, we do have a good idea of what to expect from my own experiences.

My hope is that this post will raise awareness about clefts and craniofacial differences, and that it will encourage parents who are on this road too. As someone who was born with Crouzon Syndrome, Craniosynostosis, Chiari Malformation, and a cleft palate, I can say that I am thriving today. My son has taught me a lot about myself, how I deal with our birth defects and how I view myself and him as we walk this path.  He has taught me that I am his voice, his advocate and his cheerleader. Maybe he can teach others too?

Here are some links for further research and support:

Risk of Oral Clefts in Twins

CCA Guide to Understanding Cleft Lip and Palate

Cleft Palate Foundation

CCA Kids

Do you, or someone you love, have a cleft?

Would you like further information about cleft or craniofacial support and encouragement?

Comment below or send a message!

Sara is a mama of four children, two of them being surprise identical twin girls. She is happily married to the love of her life, stays home with her children and is currently homeschooling her oldest child. Most of her writing is centered around raising awareness about Crouzon Syndrome and cleft palates, advocating for your child, homeschooling and raising multiples. Find her blog at Confessions of an Outnumbered Mom.

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SaraC

Sara is a mama of four children, two of them being surprise identical twin girls. She is happily married to the love of her life, stays home with her children and is currently homeschooling her oldest child. Most of her writing is centered around raising awareness about Crouzon Syndrome and cleft palates, advocating for your child, homeschooling and raising multiples. Find her blog at confessionsofanoutnumberedmom.com.

38 thoughts on “Cleft Awareness”

  1. Sara, I thought you were amazing before, but hearing Sweet Pea’s story told like this, I have that much more respect and love for you. All of your kids are as fortunate to have you as you are to have them. As you know, I’ve been on the other side of the cleft experience with M – she has no functional impacts, but her cleft is visible and therefore socially significant.

    Thank you so much for joining the HDYDI family and for doing all that you do to raise awareness.

  2. I never knew all the challenges that came along with having a cleft palate so I appreciate you sharing Sweet Pea’s story. I knew a doctor that would complete these operations. If I’m not mistaken, he would take a month or two out of the year and travel to countries to help children in need of the surgery for free. Thank you so much for bringing this to our attention and raising awareness. #TwinklyTuesday
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  3. I’m covered in goosebumps reading this. I had, very wrongly, never considered the daily impact that having a cleft palate would have, particularly when so small. I really think it’s wonderful to do an awareness posts as I’m sure I’m not the only one who knows so little about this!! Thank you for sharing this.
    Seychellesmama recently posted Arthur’s Second birthday | island styleMy Profile

  4. I don’t think many people are aware of the impacts of a cleft palate, beyond the cosmetic – so thank you for sharing. I can begin to comprehend waiting while your baby is in surgery for 5 hours. Thank you for sharing
    Potty Mouthed Mummy recently posted A Garden At LastMy Profile

  5. This is a great post- I’ve known a few kids with cleft palates through work- your blog is a great resource. I think it’s hard for people to understand that there is much more to a cleft palate than the cosmetic issues. I’m glad sweet Pea is doing so well x #TwinklyTuesday
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  6. Thanks for sharing. I only ever knew about cleft lips and I knew it could affect speech but I had no idea it could affect so much more. Glad Sweet Pea is doing so well! Thanks for hosting #TwinklyTuesday
    Emma’s Mamma recently posted 16 monthsMy Profile

    1. Please do! We cleft mamas have to stick together! There are dozens of resources out there, but Cleft Palate Association and Children’s Craniofacial Association are my go to sites for info.

    1. Each time I give up my son to the surgeon, it’s really HARD. For his cleft repair, I was 6 months pregnant with his surprise baby sisters…which made me more emotional than I care to admit. :)

  7. This is a really good insight into these conditions. I think you’re right – most of us tend to be thinking more of cleft lips & the cosmestic aspect when we hear cleft, but know less about the complexities of cleft palate & the problems it can cause. Sounds like Sweet Pea is doing really well, hope his speech therapy continues to progress well. #twinklytuesday
    Silly Mummy recently posted Toddler TimeMy Profile

  8. You’re such a brave woman to go through all of that. and staying to strong is so amazing! i dont know what i have done in the same situation. you should be so proud of your self! xx

    linked up from #TwinklyTuesday xx

  9. My cousin was born with a cleft palate and I was too young to really understand what it meant. She was tiny as a baby and now, reading your post, that makes sense to me. She too probably had some feeding issues. But I was about ten years old so I really can’t recall… Thank you for sharing and raising awareness for the other mums out there. My best friend has just given birth to a beautiful little boy, who sadly is likely to need help for the rest of his life. It isn’t the same in the slightest, but sometimes we all need to know that there is hope out there and everything will come good in the end. #twinklytuesday
    Jen @ 4,128 miles recently posted POTTY TRAINING THE FIRST TWO WEEKSMy Profile

  10. I must admit that I didn’t really know much about cleft palate before. You’ve done a really good job of explaining it and its impact here.
    I’m so glad that things are going well for your family now. 5 hours of surgery must have been very tough on you as parents.
    Two of my three sons were operated on as babies, each only for an hour, but it was a long, hard hour for me.
    #TwinklyTuesday
    Fionnuala from http://www.threesonslater.blogspot.com
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  11. Aaah Sara — what a traumatic thing to go through. I cannot *imagine* how hard it was for you when he went into surgery. Cleft palates seemed to be far more common when I was growing up — I can think of at least 3 kids in my school that had them. So happy that he’s got a great surgeon and speech therapist! Such an inspiring story :) #TwinklyTuesday

    Caro | http://www.thetwinklediaries.co.uk
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  12. Wow, what a story. Thank you so much for sharing. I knew of the visual impact of a cleft palate but I had no idea of the hidden troubles that came with it. I’m so pleased that your boy has the best team caring for him and hope he continues to do so fab in his development. #TwinklyTuesday

  13. What a lovely and informative post. Thank you for sharing your and your son’s stories. I’m sure it will help teach many about a little understood challenge many babies and families face. Thank goodness for the continued advances made in medicine and technology that has allowed many with cleft palates to go on to live fantastic lives. #TwinklyTuesdays
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  14. This touched me so much. I have been writing “Our Story” on my blog, my son has mental issues, depression and addiction. I think that God made me his mom, entrusting me to be strong enough to raise him. I have been through things that have made it able for me to understand my son, to some extent, and it has helped me raise him better. I think that your son was blessed to have been given to you, a better mother could not be found. Thank you for sharing your story and bringing awareness to the Cleft Palate and the issues it causes. I was totally ignorant of the feeding issues and the loss of ability to breast feed. I am sorry that it affected you both.
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  15. Such an interesting and informative post – and very brave. It must have been terrifying having your little one have such long surgery at a young age but great that it is now complete and the focus can be on speech and recovery. Good luck with it all and thanks for hosting #TwinklyTuesday
    Yvette recently posted The Imperfect Parents ClubMy Profile

  16. What a wonderful story and such a good post highlighting the condition. I can’t imagine how tough it is to go through but I’m sure it makes you stronger as a parent and as a family. Your story will help and inspire so many parents on the same journey. xx
    teacuptoria recently posted Your Best Is Good EnoughMy Profile

  17. What a journey you have been on with your sweet pea ( I call my son sweet pea as well!). I have known a couple of people who were born with Cleft but not well enough to start a conversation. Thank you for sharing your story #bigfatlinky
    Hannah Atkinson recently posted What is Croup?My Profile

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