How To Connect with Our Guest:
Guest: Jessica Sturgill
jessica@mentalhealthfirstsd.com
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Episode 24
Cleft Lip & Palate
Hearing your child might have a cleft lip or palate can be quite scary. It is diagnosed around the 13-20th week of a woman's pregnancy, and can require some big decisions for parents about surgeries and care. On this episode you'll hear one mom's experience of learning that her baby girl was going to be born with what she calls a "cutie mark." She shares her journey, and some amazing tips and resources. And if it is someone you care about that is going through the same thing, she offers insight on how you can support them.
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Show Notes:
According to the CDC, the roof of the mouth (palate) is formed between the sixth and ninth weeks of pregnancy. A cleft palate happens if the tissue that makes up the roof of the mouth does not join together completely during pregnancy. For some babies, both the front and back parts of the palate are open. For other babies, only part of the palate is open.
Children with a cleft lip with or without a cleft palate or a cleft palate alone often have problems with feeding and speaking clearly and can have ear infections. They also might have hearing problems and problems with their teeth.
About 1 in every 1,600 babies is born with cleft lip with cleft palate in the United States.
About 1 in every 2,800 babies is born with cleft lip without cleft palate in the United States.
About 1 in every 1,700 babies is born with cleft palate in the United States.
The causes are still primarily unknown. It could be a result of genetics, medications, smoking, diabetes, the mom's environment, etc. It’s diagnosed during the early stages of pregnancy around week 13 with an ultrasound. Treatment entails surgery in the first few months of baby's age, or at least by 12-18months. Treatment is recommended because it can help babies eat, breathe, speak, hear, and develop in a better way.
Please keep in mind this is a sensitive subject for so many parents. Therefore, it is recommended that instead of using the term “Birth Defect,” it is preferred to use “Birth Difference” or “Birth Challenges.”
Here is a recap of Jessica’s Story:
What was it like for you as a Mom learning of this diagnosis?
The feeling of failure, guilt, and shame.
I had to grieve what I thought was going to be. “You’re going to miss your baby’s smile”
MTHFR Gene (Methylenetetrahydrofolate reductase)
Causes miscarriages, folic acid is a toxin/poison to people with this gene, MTHFR gene and birth differences are connected. MTHFR Gene is screened through a blood test and she highly recommends it.
4th trimester- Maternal estrogen hormones are still running through baby from mom the first 3 months which creates a womb-like healing environment justifying early repair surgeries.
Surgery and Wound Care- Jessica’s daughter’s first surgery was at 19 days old. That area needed to be kept very clean post-op, and ear tubes were placed at 19 days old to be proactive. She also had to massage her lip to reduce her scar. Jessica’s daughter had 4 surgeries before the age of 5. Her palate surgery was at 10 months old. Her p-flap surgery (only 50% of cleft palate children need to have this) was in the last year. The last surgery this year will be the bone graft.
Her Recommended Support and Resources:
Cleft Mom Support Facebook Group
Cleft Mommy Support Facebook Group
Children’s Hospital Los Angeles
Early Cleft Palet Repair Team
https://www.chla.org/craniofacial-and-cleft-care-program
-Dr. Urata
-Dr. Hammoudeh
Consider getting additional support from family or hiring someone
How to talk to your child about their cleft palate:
Give your child a unique label for their scar like a “cutie mark”
You’re a superhero
Discuss bravery
Feedings
Pigeon Bottles
Dr. Brown’s Specialty Feeding Bottles
Continued Services needed:
Speech Therapy
Dental work/orthodontics
Final Tips:
Bring your own bottles to the hospital when you give birth.
After birth your baby should be able to be with you if it is an isolated cleft issue. So be sure to advocate and voice your preferences to the hospital staff.
End of Show Recommendations: