Cleft Lip and Palate: How I Came to Embrace Real Food

 

We found out about my son E’s cleft lip and palate at my 20-week ultrasound in 2008. Then I went to an ultrasound clinic and they found other abnormalities.  After having an amniocentesis, I had to wait 10-14 days to hear whether or not E was going to be born with a disease or syndrome.  Those were probably the worst days of my life.  I spent a lot of time meditating, breathing, doing yoga, crying, and reading very distracting and escapist books (Twilight, anyone?)

We dodged most of the genetic bullets we feared during those days of waiting.  But there were still the issues at hand.  Tests.  Breastfeeding complications.  Surgeries.  Waiting.  But first there was the cleft.  Was there a nutritional deficiency that caused it?  Was there something I could do to fill in the deficits?

E’s cleft was a bilateral cleft lip and palate, complete on the right side and incomplete on the left.  You can see it pretty well in the picture above. It was this smiling little face that solidified by commitment to real food.  It was this, coupled with his other health concerns that drove me to start Our Nourishing Roots, and to write my REAL FOOD 101 ebook.

E had surgery when he was two months old to repair the lip, and again when he was 6 months old to repair the palate.  He played with his stitches after his second surgery, so he had a third minor surgery when he was 11 months old to repair the fistula that formed.

During this first year of life, E was also in physical therapy once a week.  He was born with severe torticollis, most likely from his sunny-side up and very low position in utero coupled with being suctioned (twice!) during delivery.  We met every week with a physical therapist that I loved, and from there also started seeing a pediatric chiropractor.

In spite of the therapies, he still ended up with plagiocephaly and got a reshaping band or helmet to guide his head shape into better symmetry.  I can’t resist showing you another picture of him in his cute little helmet.  We had some stickers made so it was a little more decorative than plain white.

Oh, and did I mention that during this tumultuous first year of his life, I was pumping breast milk and feeding it to him in a special needs feeder?  I felt like that was all I did: pumping, feeding, dishes, sleeping, therapies, doctors, surgeries.

Prior to all of this, I was already familiar with Nourishing Traditions and implementing several of it’s ideas.  But I hadn’t found raw milk or gotten cod liver oil yet.  When I found out E had so many health issues, I knew what I needed to do.  I got good local eggs, found raw milk, and started taking fermented cod liver oil & butter oil blend every day.

I felt a lot better.  And here’s the funniest part: E couldn’t get enough cod liver oil!  He would say “yummy!” and ask for more and try to steal bites of his brother’s spoonful.  Bodies are so intelligent to crave what we need most.

That was the true turning point.  I saw how much better I felt.  I saw how E’s little body was soaking up the vitamin A and D and K2 and various nutrients in the dark yellow egg yolks and cod liver oil and grass-fed butter.  It all fell into place for me.  This was why it was worth the effort of making real food.

Sure it’s a bit odd at first to get used to soaking oatmeal for breakfast, or picking up raw milk from a drop point.  But you get used to it!  And really, isn’t it worth it?  I feel so much better, and I know my family does, too.

Today, E doesn’t have any issues with his neck, very few with his cleft, and the others have cleared up completely.  I know it’s just one case, but I really believe that a combination of real food, holistic therapy, and delayed vaccinating is what has made the difference for E.  I will continue to be his advocate and do whatever I need to to make sure he is well-nourished in every way.

This post is a part of Real Food Wednesday, The Mommy Club, Healthy2day Wednesday, Allergy-Free Wednesday, Simple Lives Thursday, Pennywise Platter, Full Plate Thursday, Fresh Bites Friday, Fight Back Friday, and Fresh Food Flicks.

PAID ENDORSEMENT DISCLOSURE: In order for me to support my blogging activities, I may receive monetary compensation or other types of remuneration for my endorsement, recommendation, testimonial and/or link to any products or services from this blog.
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Comments

  1. Awww, he is darling 🙂 We love little E!

    • He’s so little in these pictures. If people could only see the sassy little thriving thing he is now 😀 (And his neck is completely straight!)

  2. Katherine says:

    It was very courageous of you to share something so close to home…That must have been a tough year or two, I’m sorry you had to go through that travail! Kudos to you, Mama and thanks for sharing!

    • Thanks 🙂 It was the most “survival-mode” year I have ever gone through, and that includes the abuse in my childhood! It was totally worth it though 🙂

  3. Gorgeous post- thanks for sharing. What a beautiful little boy!!!

    I was born with a cleft palate and I’m now healing my son’s autism with real food. I can relate to how seeing your child thrive makes it SO worth it. They are worth it all.

    xx

    • Thanks so much for sharing 🙂 I can spot people now who are adults born with clefts, but I never know how to bring it up without being insensitive. It’s good to hear from you, just because of that 🙂

  4. What an inspirational post! YOU are an amazing mother, truly! And it’s obvious your little one is a fighter. Thank you so much for sharing. He is precious!!!

    Be Well,
    –Amber

  5. Thank you so much for sharing your story! My son had to wear a helmet as well for nearly 5 months. His head is still a little flat but nearly perfect. He had a camouflaged helmet 🙂 You are such a good mom!

    • E is still a little asymmetrical, but on my husband’s side of the family they all have huge bowling ball heads when young. So E’s head grew a lot and evened out!

  6. Wow, thank you for sharing your story. You really have a motivating story. I hope you never feel any guilt about this, but only hope in the fact that you are going to such extraordinary lengths to be such a wonderful, nourishing mommy!!! E is such a cutie, too! Ya know, Joaquin Phoenix had a cleft palate….SEXY!!!!

  7. His recovery is amazing! What a difficult first year. And what great things you have done for your family.

    By the way, his eyes are gorgeous!

    Thank you so much for sharing this.

  8. Wow, that is such a great story! Kudos to you for all of that research and planning and love!

  9. Beautiful child! What an empowering story! Thank you for sharing, I know it’s not easy. I was actually verbally attacked by “close” friends when I shared my daughters story on my blog… I completely understand the “survival mode”, all of my energy went into research & healing my lil angel.

    You are an awesome mom!!! Keep going strong!

  10. Beautiful, K. Thanks for sharing. He’s one lucky boy to have you as a mom! 🙂

  11. You’re a wonderful mother and a strong woman! It takes so much to do what you did for him – the endless pumping in itself during that first year would be enough to discourage anyone. There’s nothing like a mother’s love, is there? God bless you and your family 🙂

  12. What a cutie pie! Thanks you for sharing this, Kendahl!

  13. I had a cleft palate when I was born(60’s) it wasn’t repaired until I was 9. I had years of speech therapy. Other than sounding very nasally you would never know.

    But, you are right to be your sons’ advocate. This will come in handy as school as he begins to read the teachers will probably try to keep in a lower reading group if they can’t understand him. That’s what my teachers try to do to me, but, my foster parents and social workers wouldn’t allow it, especially since all I ever did was read and they had me tested. They knew there was no trouble with my reading, just speech.

    But, as others have posted your baby does have beautiful eyes. And I’m glad that in every other respect that he is healthy

  14. Elizabeth says:

    Thank you for sharing your inspirational story. You clearly have a special and handsome little guy there!

  15. Thanks for sharing your story! Little E looks adorable!
    My son was born with the facial malformation Lymphangioma. He had his 10 hour long surgery at 8 weeks old so I can put myself in your situation. Once we started to embrace real food and focus on nutrition he has stayed a lot healthier, no more infections in his mouth or lip.

    My son is now 18 and his malformation is still visible and his first years were tough. However, he is now a stage magician in spite of his facial malformation..

    I wrote a post that you may find interesting:
    http://joshealthcorner.blogspot.com/2011/04/when-child-that-is-different.html

    Once again, thanks for sharing your story.

  16. Kendahl, your story is very moving … Thank you so much for sharing it with us.

  17. My second was born with bilateral club foot and, thankfully, I asked not to be told of an “markers” at the 20W ultrasound unless there were two or more. I just didn’t need the stress. It’s hard enough just to be pregnant.

    This was after a TF diet, by the way. Diet is a factor, but pregnancy is a tough game of poker. People in the TF community can be a bit judgmental on this issue — from lack of knowledge.

    Amanda

  18. I’m so glad to hear that your son has improved so much. That first year with so many unknowns is exhausting and frightening. Thanks for sharing this week at Allergy-Free Wednesdays. We hope to see you back again next week.
    Have a great weekend!
    ~Michelle, AFW Hostess

  19. Hi Kendahl,
    Your little E is just adorable and certainly has stolen all our hearts, please give him a hug for me! Hope you are having a great spring week end and thank you so much for sharing with Full Plate Thursday.
    Come Back Soon!
    Miz Helen

  20. Beautiful story!

  21. beautiful and inspiring post! I wish you and E all the best

  22. I found this post on Pinterest, and I just had to leave a comment because my 8 month old son was born with a unilateral cleft lip so I always feel a connection with clefty families. E is adorable, and I am so happy to read that he is doing well. My little guy had his lip surgery two months ago and has healed up great. Its so nice to have all of that behind us. What an emotional roller coaster ride it was from my 20 week ultrasound to the last appointment with his cleft team. We grew so much from it and are truly blessed by our little baby. I have been looking around your blog today and you have awesome information. I am excited to read and learn more,thank you!

    ~Cierra

    • Cierra, thanks so much for finding me here and commenting. I love to hear other cleft stories 🙂 I’m so glad your little guy is doing so well!

  23. I found this post on Pinterest, and I just had to leave a comment because my 8 month old son was born with a unilateral cleft lip so I always feel a connection with clefty families. E is adorable, and I am so happy to read that he is doing well. My little guy had his lip surgery two months ago and has healed up great. Its so nice to have all of that behind us. What an emotional roller coaster ride it was from my 20 week ultrasound to the last appointment with his cleft team. We grew so much from it and are truly blessed by our little baby. I have been looking around your blog today and you have awesome information. I am excited to read and learn more,thank you!

    ~Cierra

  24. Great post. Thank you so much for sharing your beautiful little boy with us and the agonizing experiences you all went through. I am a nurse and have been wanting to volunteer with Operation Smile for some time. I am so grateful your little guy had you to take such good care of him. He is absolutely beautiful. Gorgeous. Thanks for introducing him to us. Jana

  25. PRAISE GOD FROM WHOM THESE BLESSINGS FLOW!

    What an inspirational message for real nutrition and breast feeding. E is a beautiful child who was so blessed to have a mother who would go against the mainstream in order to do the right thing for herself and her baby.

    I am so blessed to have read this. Thank you and E.

    God Bless You

    Karen

    God B

  26. Thanks for sharing your story about your special son. Our oldest was born 21 years ago with a unilateral cleft lip and palate. His lip was repaired at 3 days old, and we went on from there. A little over a year ago he had jaw surgery and has one surgery left to correct sinus passages and his surgeries will be over! He’s been such a blessing to us, and continues to be as well. If you want to see his photo, he’s in the red plaid shirt at http://www.bartlettfarm.us . We totally changed our diet and moved to a farm to provide for ourselves and others what we didn’t have before he was born.

  27. What a great success story, thanks for sharing. We too started on raw milk, butter, and cod liver butter oil and notice a dramatic change in the way we feel and energy.

    Would you mind sharing which type of cod liver oil E is so fond of? Some days its a challenge to get my kids to take it. Thanks.

  28. Thank you for sharing the story about your son. I work at a school for the deaf in Baja California, Mexico. A little boy was recently brought to us that was born with a cleft palate. Juan Jose , four years old is such a joy to help care for! Blessings!!

  29. My daughter, Aerin, was just born in March and diagnosed, after 4 weeks in the NICU, with Prader Willi Syndrome. The early stages of PWS include severe hypotonia (low muscle tone) and hers was such that she had to have a feeding tube put in before leaving the hospital since she was not strong enough to eat on her own. She’s 4 months now and doing MUCH better on that front, praise the Lord! The later stages of PWS include hyperphagia–a severe desire to eat due to a malfunction in the brain that never tells a person with PWS that they are full. As a result of the hyperphagia and low muscle tone, people with PWS have to be on a very strict, low-calorie diet. We have been researching better ways to eat so that we, as a family, can help Aerin meet her maximum nutritional potential both now, as she grows to overcome low birth weight and grow in strength, and later, as she lives within this diet regimen. That is how I have come across your site, which I am very thankful for, as every calorie she consumes has to be nutrient dense to overcome the calorie restriction. Thanks so much for sharing your story and for all that you do in your blog!

  30. Tears…
    Way to go mama and E! Both of you are beautiful 🙂

  31. He is precious! Thank you for sharing this story about your sweet E with us! I have just started on this real food journey. My daughter just turned one last week. She screamed until 7 and 1/2 months. She had thrush/yeast issues and so did I. She has been exclusively breastfed and is still breastfeeding. I have been doing a lot of reading and researching, Weston Price/GAPS/Paleo, etc. I have vaccinated her up until this point. I am wanting to delay, I think. She is due for chicken pox and MMR. How long did you delay E’s vaccinations? Also, what flavor of Green Pasture Cod/Butter oil do you give your kids. I have been taking the capsules, but I need to get my daughter on some soon. Thank you!

    • I get the plain FCLO/BO blend in gel for my boys, and in non-gelatin capsules for me from the source on my resource page: http://ournourishingroots.com/resources/#supplements

      As for delaying vaccinations, I just put them off until he had to have surgery and then I would catch him up a little a couple of weeks beforehand. But he hasn’t had surgery since he was 1, so he hasn’t had any since then. I’m not even sure I will continue, or when, with the rest.

  32. What a cutie! Thank you for sharing your story. I am a mother myself and can only imagine the dreading and waiting you had to experience during your pregnancy and the testing. Not to mention everything after he was born. It’s great to hear that there is a happy ending and your son is doing well 🙂

    Do you have a cod liver oil recommendation? I know not all brands are created equal.

  33. Thank you so much for sharing your story, Kendahl. What a journey this has been for you.

    Props many times over for you for being your own and your family’s number one advocate!

    <3

  34. Thank you do much for sharing! Our little guy was born with a genetic syndrome called 22q and he has a sub mucosal cleft palate. After he was diagnosed I dove into real foods head on. He has a multitude of issues, but with all his dx we have managed to stay out of the doctors office. He goes in about once a year now. We see specialists, have therapy, and see a ped chiropractor and are no vax, and he is thriving as well!

  35. Thank you for writing this. My husband, his brother and his father were all born with cleft lips/palates. I have heard many stories about surgery after surgery (my husband had to have 6 in total). I have been fortunate enough to learn about the Weston A. Price foundation and all of it’s nutritional wisdom before conceiving. It is my mission to build up both our nutrition and heal his DNA to prevent our own child from having to deal with the same issues. His family thinks that nutrition could have nothing to do with it and I should just brace myself for the inevitable. I believe that I can prevent this problem in my children and I would never forgive myself if I did not try. Thank you for writing this story and reminding me to be diligent about our nutrition for the sake of our future generation. I am so luck to have found this community before starting a family of my own.

  36. I read your post about cleft lip and palate with interest. I too had a boy born with this. looking back i’m surprised that when a child is born with this or any other issue they don’t do more to look into the mother’s health. I didn’t really find it that helpful to be told it was just one of those things, and the fact that i was later diagnosed with hashimoto’s and thyroid cancer only confirmed to me that i probably hadn’t been well for years leading up this pregnancy and beyond. I too have turned to the principles of weston price to try to rectify things.

  37. What a beautiful boy – I came across this article researching whether cod liver oil intake can cause cleft lip due to vitamin A (I’m 13 weeks pregnant) there is so much conflicting evidence out there! Glad your little boy is doing well 🙂 Thanks for sharing.

Trackbacks

  1. […] for participating last week. Among the food entries, Kendahl from Our Nourishing Roots posted about her son’s cleft palate and the care and nourishment she is showering on her son and reports on his progress and his […]

  2. […] Cleft Lip and Palate: How I Came to Embrace Real Food Healthy Teeth: Vitamin K2, Metabolism, and Homemade Mint Toothpaste REAL FOOD 101: How to Make Sweetened Condensed Milk […]

  3. […] my son E was born, it was amidst a flurry of health problems including a cleft lip and palate.  For his first year of life I breastfed him and made his baby food from scratch and added plenty […]

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