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July Is National Cleft and Craniofacial Awareness and Prevention Month

July Is National Cleft and Craniofacial Awareness and Prevention Month

Posted by Sherri Tutkus on 30th Jul 2021

Children who have cleft lip, palate or other craniofacial anomalies may have other craniofacial anomalies or genetic disorders that go along with these birth defects. Health professionals with knowledge and the ability to share information on the endocannabinoid system would benefit patients and families as they navigate mainstream medicine looking for the best possible outcomes for their children.

National Cleft and Craniofacial Awareness and Prevention Month is designed to raise awareness and improve understanding of craniofacial clefts (clefts of lip and palate) and other conditions of the head and face that can affect quality of life.

In the United States 2,600 babies are born a year with cleft palate and 4.400 babies are born with a cleft lip with or without a cleft palate. (1) Other craniofacial birth defects may include Craniosynostosis (skull suture and fusing prematurely), anotia/microtia (ear is missing or underdeveloped) and anophthalmia/microphthalmia (missing or abnormal small eyes)

My son Nicholas was born with both a cleft lip and palate, as well as a rare genetic disorder called Branchio-Oculo-Facial Syndrome (BOFS). He had craniofacial anomalies requiring surgical correction to improve the quality of his life, and spent his first 5 months in between the NICU of where he was born and Children’s Hospital.

Children with orofacial clefts and other craniofacial conditions have quality of life issues that may include:

  • Imparied ability to feed
  • Impaired language development
  • Risk for eye, ear and upper respiratory infections
  • Risk for hearing issues
  • Risk for problems with teeth and oral hygiene
  • Many of these children with craniofacial anomalies often have other genetic disorders that affect quality of life

National Cleft and Craniofacial Awareness is important as there are risk factors for developing a cleft lip and palate, including:

  • Family history - parents with a family history have a higher risk
  • Exposure to certain substances during pregnancy:
    • Cigarettes, alcohol and certain medications
  • Being diabetic
  • Being obese during pregnancy

The risk factors are important because cigarettes, alcohol, medications, diabetes, obesity all contribute to Endocannabinoid System Deficiency, which means that we may not be making enough of our own internal endogenous cannabinoids to keep our bodies in balance.

The Endocannabinoid System is the most important system in our body because it regulates all of our organ systems and neurotransmitter signaling systems. It’s important to take care of the ECS and utilize as many supportive tools as possible, while eliminating those things that do not nurture the ECS.

In fact, cannabinoid therapeutics is much more than just using cannabis. There are a plethora of tools you can integrate into your health and wellness regimen. After all, we have an endocannabinoid system not because of the plant, but because of our own internal endogenous cannabinoids, which happen to mimic the plant’s phytocannabinoids.

I am not going to get into whether or not women should use cannabis while pregnant because it is a controversial issue. Most medical professionals advise pregnant women to avoid ALL substances, including cannabis. In the long run, it’s important to explore the risk/benefit ratio and why you would put any substance in your body that may affect fetal development.

However, renowned Los Angeles physician Dr. Bonnie Goldstein - a pediatrician, cannabis medicine practitioner, and author of “Cannabis Revealed” - believes the greatest danger to pregnant women or nursing mothers is Child Protective Services, noting that “the attempts and threats to remove children are the most serious risk to families. Until society and the medical system changes, mothers need to protect themselves first by abstaining.”

My son Nicholas was born with a moderate case of a rare genetic disorder called Branchio-oculo- facial syndrome. Kids with BOFS have a variety of challenges very similar to those kids with autism.

The clinical characteristics of BOFS include

  • Skin defects on a spectrum from mild to severe
    • Example: barely perceptible thin skin or hair patch to a big red lesion to large weeping erosions
      • Nick has a small skin defect on his right neck
  • Ocular anomalies on a spectrum that range from mild to severe
    • Small eyes
      • Nick has this.
    • Missing one or both eyes
    • Missing eye tissue (often looks like a big black dot in the eye)
    • Narrowing of tear ducts (can cause fistulas, excessive tearing, and eye infections)
      • Nicholas had this
  • Facial anomalies
    • Large distance between eyes
    • Broad nasal tip
      • Nicholas has this. His nose is abnormally large.
    • Upslanted area at the inside corner of the eyes
    • Cleft lip or structures that give appearance of repaired cleft lip
      • Nick looks like he has a pseudo cleft
    • Cleft lip with or without cleft palate
      • Nicholas had this and had surgery to correct it.
      • Nicholas also had to have a feeding tube the first year of his life until he was able to suck.
    • Cleft palate
    • Upper lip pits
      • Nicholas has this
    • Lower facial weakness
      • Nicholas had this
    • Asymmetrical face or particle 7th cranial nerve weakness.
      • Nicholas had this and had facial reconstruction. He had a 12 hour microvascular surgery with three surgical teams performing a muscle transplant from his thigh to his face connecting nerves, veins and arteries. It was successful and his face is now reanimated.
    • Malformed and prominent external part of the ear
    • Temporal bone anomalies
    • Hearing loss
      • Nicholas has moderate to severe bone conduction hearing loss and wears hearing aids.

Treatment of rare genetic disorders with craniofacial anomalies require a multi-disciplinary team. Nicholas’s team included:

  • Genetics
  • Craniofacial and plastic surgery team
  • Gastrointestinal and Nutrition
  • Ophthalmology
  • Otolaryngology
  • Dentistry and Orthodontics
  • Therapy
  • Social Services and Home Services - PT / OT / Speech and Language

Children with craniofacial anomalies may have other challenges where cannabinoids may be beneficial and these include:

  • Developmental Delays
  • Intellect across the spectrum
  • Sensory Challenges - pain perception
  • Language Challenges - both expressive and receptive
  • Emotional Challenges - emotional processing
  • Social Challenges - behavior disorders
  • Integration issues

All of my son’s treatments were about correcting the defects and treating the symptoms to improve quality of life. My son would have benefited from cannabinoids as a complimentary tool for the traditional care that he so desperately needed to get him where he is today. 

I know that I would have benefited from cannabis during this time because I was traumatized by what he had to go through as a baby and child.

Today my son is thriving. He has had multiple surgeries over the years to correct his craniofacial anomalies. He is deaf, wears hearing aids, and at the age of 12 he fully integrated into the public school system with accommodations.

He will be entering into the 10th grade this fall, is taking all honors and advanced honors courses and is on the honor roll. He is playing baseball, football and has self taught himself piano. He is the epitome of what it means to live his best life and to never give up.

My son is my hero.



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