Blog
Lip Taping
Should we be doing lip taping?
This is a very common question asked by parents.
Lip taping is a treatment that is done prior to lip closure surgery and starts shortly after birth. It can be done in conjunction with the NAM appliance or by itself. It can also be for a unilateral or bilateral cleft lip!
It can also be done with or without nasal stents (if no NAM appliance). It’s up to your doctor what he or she prefers.
If your baby is undergoing NAM therapy, lip taping may not be indicated if good results are coming from the NAM alone! Your doctor will let you know.
What is it?
Lip taping means placing a steri-strip across the cleft lip and:
For a unilateral case: pulling the tape more toward the cleft side to encourage movement toward that side.
For a bilateral case: pulling the premaxillary segment, or “nub,” as parents like to call it, backwards.
Lip taping narrows the size of the cleft by moving the cleft segments closer together.
Pros
- Good for babies who cannot tolerate the NAM appliance
- Can be used with the NAM appliance for more movement
- Helps to bring cleft segments closer together
- Babies tolerate it very well
- Pain-free
- Non-invasive
- Accomplishes similar results to lip adhesion* without the surgery
*Lip adhesion involves surgery shortly after birth where the lip is stitched together just by the outer tissue (no muscle attachments). Babies still undergo the typical lip repair surgery even if lip adhesion is performed.
Cons
- Frequent changing of tape
- Some babies develop skin irritation to tape
How does it work?
The tape is pulled from the non-cleft side over to the cleft side to encourage muscles and jaws to move closer together.
- Steri-strip is applied to non-cleft side
- Cheeks are pinched together
- Strip is pulled over the cleft from the non-cleft side and adhered to the cleft side
The tape is left on 24 hours a day and does not hurt the baby.
It should be changed at least once daily but it is usually changed more than that because it gets wet.
I hope this helps! Feel free to drop a comment below if you have any questions.
https://pubmed.ncbi.nlm.nih.gov/8192382/
Healthy Chocolate Pudding
Tough times call for chocolate.
No doubt about it- this is a historical time for the world right now. With the coronavirus pandemic happening, a lot of us are spending more time at home.
As this is being written, many are probably scared, frustrated, and upset because cleft surgeries have been labeled as “non-urgent,” meaning that cleft lip repair you have been preparing months for has been postponed until who-knows-when. I can assure you, your craniofacial team is working hard trying to get these surgeries back up and running as soon as it is safe to do so. You are not alone! Reach out to your fellow cleft families on Facebook or in your community for support.
Meanwhile, here is a recipe that can help you:
- indulge in some chocolate without feeling guilty
- have as a post-surgery snack when surgeries are back on
- use as a way to get some nutrition for your kiddos!
Healthy Chocolate Pudding
No cooking necessary, no refined sugars, quick and easy.
Ingredients
- 1/2 banana
- 2 tbsp cacao powder unsweetened
- 2 tbsp almond butter
- 1 tbsp honey or maple syrup
- 2 tbsp oats
- 1/4 tsp vanilla extract
- pinch salt
Instructions
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Pour all ingredients into a blender, and blend! Or, you can use a food processor.
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If you prefer, chilld for 25-30 mins in the refrigerator
Let me know if you have any requests or questions. Like it says in my About Me section, I’m a nutrition fanatic!
Please, everyone stay safe and healthy. Thinking of you all!
Natal/Neonatal Teeth
Teeth at birth??
It is not uncommon for cleft babies to be born with one or some teeth already erupted. These are also usually supernumerary teeth, or “extra teeth.”
Let’s start with some definitions you may hear from your craniofacial team during an examination…
Natal Teeth: Teeth that are present at birth above the gumline
Neonatal Teeth: Teeth that erupt during the first month of life
You’re probably thinking this is odd. It’s actually quite common in cleft babies to not only have natal or neonatal teeth, but also to have supernumerary teeth. Don’t worry, it’s not usually a whole mouth full of extra teeth…just one or a couple. About 10% of natal teeth are also supernumerary.¹
Usually, teeth erupt at about 6 months of age
Meaning, teeth present at birth is an unusual finding, but it does happen.
- Studies have found that natal/neonatal teeth are more common in bilateral cleft lip and palate babies.
- The most common place for a natal tooth is on the upper jaw near the cleft site
Luckily, the presence of natal/neonatal teeth does not affect the baby teeth or permanent teeth.²
What is usually done when these teeth are present?
There are problems that can occur with natal/neonatal teeth:³
- Risk of baby choking on loose natal/neonatal tooth
- Discomfort during feeding
- Interference with NAM appliance
- Ulceration on tongue from tooth
If none of the above are occurring, and the tooth is not mobile, it can generally be left alone. If the tooth is in the cleft site and asymptomatic, it can stay until the lip surgery is performed. During that surgery, the surgeon can simply remove the tooth.
¹Tannure PN, Oliveira CA, Maia LC, Vieira AR, Granjeiro JM, Costa Mde C. Prevalence of dental anomalies in nonsyndromic individuals with cleft lip and palate: a systematic review and meta-analysis. Cleft Palate Craniofac J. 2012 Mar; 49(2):194-200. ²Cabete HF, Gomide MR, Costa BEvaluation of primary dentition in cleft lip and palate children with and without natal/neonatal teeth. Cleft Palate Craniofac J. 2000 Jul; 37(4):406-9. ³Kadam M, Kadam D, Bhandary S, Hukkeri RY. Natal and neonatal teeth among cleft lip and palate infants. Natl J Maxillofac Surg. 2013;4(1):73–76. doi:10.4103/0975-5950.117883.
Cleft Lip & Palate Support Groups
There is so much information parents are bombarded with as soon as they find out in their anatomy ultrasound that their child has a cleft. While a craniofacial team is so helpful and important, many parents seek support from those who are going through this same experience or have gone through it already.
The most common question I am asked from parents is:
What’s next?
Many parents turn to Facebook and read hours and hours of posts, trying to figure out the road that lies ahead for their little one.
If you are feeling alone, or this sounds familiar to you…
I wanted to put together a list of good resources and support groups for cleft families.
According to a study, most of the discussion in support groups surround topics such as maintaining dental health and how to care for children before and after surgeries.
Here is a list of some great support groups and resources:
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ACPA Family Services: The ACPA has real patients write their stories on the website.
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Cleft Palate Mom Support Facebook Group: created by a mom of a cleft baby. The administrators write:
“a group for support of new moms, or seasoned moms, or grandparents with a child, or grandchild with a Cleft Lip/Palate. We answer questions, and just are here for the love.”
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Cleft & Craniofacial Connection Facebook Group: all friends and family who are interested in gaining information, support, and creating public awareness are welcome here!
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The Cleft Lip & Palate Foundation of Smiles: There is a tremendous amount of information and support you can gain from this website. Plus, it has really cute cleft products you can purchase!
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Cleft Mom Support Facebook Group: this is a support group for parents/adoptive parents/guardians and grandparents of children born with a cleft lip and/or palate. This support group is ADORABLE with how they have a Surgery and Buddy List, where you can write when your child is having surgery. Every day, they post who is having surgery so love and support can be sent your way!
I hope this list helps, and you can find comfort in knowing YOU ARE NOT ALONE!
Reading stories of what others have gone through gives hope, education and most importantly, connection.
Thank you for reading!
Stainless Steel Crowns
To crown or not to crown?
After visiting the dentist, you may walk away with a large treatment plan for your cleft child, including stainless steel crowns.
You may be asking yourself, what are stainless steel crowns?
Stainless steel crowns, sometimes referred to as “caps” or “silver crowns,” are strong, durable, and cost-effective ways to protect baby teeth. Baby teeth are so important to protect because they serve as space-holders for permanent, adult teeth. If baby teeth are removed too soon, your child is at risk for permanent, adult teeth coming in at the wrong locations in the mouth. This leads to an improper bite and tilting of teeth, which leads to improper function.
They are usually indicated when your child has a high-cavity risk or a large cavity in the tooth. The reason a filling cannot just be done on these teeth is because of the size of the cavity. If a crown is being recommended by your dentist, that means a simple filling could potentially break just due to the size. A crown covers the entire tooth and protects the tooth structure underneath it.
What puts a child at a high-cavity risk?
To put it simply, having a cleft lip and/or palate already puts your child at a high-cavity risk.¹
- The reasons are not entirely clear, but much research shows that because of the tooth malformations and malpositioning of teeth that result from a cleft, the plaque buildup is much greater in cleft patients. Naturally, through chewing and saliva flow, plaque is wiped away from the teeth, but teeth in different positions because of the cleft may be more difficult to clean.
- The nasal discharge from the opening in the palate also makes it difficult to keep teeth clean.
- Hypoplastic lesions, or weakened enamel, is more prevalent in cleft patients. If the enamel is weak, the child is more susceptible to cavities.²
- Lastly, it’s been found that cleft patients partake in a more sugary diet than non-cleft patients.
OK, if I do the crown, what are my options?
There are 4 options for the type of crown to get. Which one to choose depends on esthetics, function, and finances.
Stainless Steel Crown
- Durable
- Strong
- Long lifespan
- Cost-effective
- Not suitable if child has metal allergies
Stainless Steel Crown with White Facing
- Has a tooth-color on the front of the crown
- More bulky to add white color
- Tend to chip over time
Composite Strip Crowns
- Entirely tooth-colored
- Takes longer to put on than a stainless steel crown
- Because it takes longer, sedation is recommended
- Over time, discolors
- Significantly weaker than stainless steel crowns
Zirconia Crowns
- Entirely tooth-colored
- Smooth and shiny
- Do not stain
- Extremely strong
- More expensive
Moving Forward
Just because your child has a cleft and is at higher risk for developing cavities does not mean all of the teeth should have crowns. Unless his/her dentist is recommending crowns, do not voluntarily get them.
It does mean more care should be taken to prevent cavities from occurring, at least with the parts you can control.
What this includes:³
- Less sugary snacks
- Always clean any appliances in the child’s mouth at least twice a day
- Have regular dental examinations
- Fluoride supplements in non-fluoridated areas
- Practice good oral hygiene by brushing twice a day!
Thank you for reading! I hope this helps answers some questions and makes these crowns seem less scary. At the end of the day, they are good for your child and will help ensure proper positioning when those adult teeth do come in.
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Britton, K.F.M., Welbury, R.R. Dental caries prevalence in children with cleft lip/palate aged between 6 months and 6 years in the West of Scotland. Eur Arch Paediatr Dent 11, 236–241 (2010). https://doi.org/10.1007/BF03262754
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Shashni R, Goyal A, Gauba K, Utreja AK, Ray P, Jena AK. Comparison of risk indicators of dental caries in children with and without cleft lip and palate deformities. Contemp Clin Dent. 2015;6(1):58–62. doi:10.4103/0976-237X.149293
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Preventing caries in cleft lip/palate. Br Dent J 202, 61 (2007) doi:10.1038/bdj.2007.59
Nutrition-Packed Smoothie Bowl
Looking for a healthy recipe that is great post-surgery?
Look no further!
This is my go-to recipe for something quick, nutritious, and can be eaten after any kind of mouth surgery (or just on a random Saturday morning).
If your child is small, and it is difficult to feed with a spoon, the following is a great option to squeeze the smoothie into his or her mouth. You’ll also have full control over the portion: Squeasy Food Pouch
Nutrition-Packed Smoothie Bowl
Perfect for that post-surgery food. The cold will feel good on the surgical sites, and the nutrition content is great for keeping energy up and bellies full.
Ingredients
- 1 scoop protein powder Tone it Up protein powder is my go-to (can omit this if for a child)
- 1/2 cup unsweetened non-dairy milk almond or coconut work!
- 1 medjool date remove pit
- 1/4 cup frozen mango
- 1 cup spinach
- 1/2 frozen banana
- 1/4 avocado
- 1 tbsp flax seed meal
Instructions
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In a high speed blender, combine all ingredients and blend
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When smooth, serve!
Recipe Notes
This recipe will be loved by adults and kids alike! Feel free to substitute mango for blueberries, strawberries, or your favorite fruit.
Feel free to top with soft fruits and drizzle with honey!
The flaxseed meal in this recipe will help with the recovery from surgery for getting rid of bloating post-anesthesia!
I hope you enjoy the smoothie. The great thing about this is that you can disguise medicine in the smoothie too! If your child is being fussy about taking the medicine, go ahead and put the liquid right into the mix.
First Dental Visit
Many people ask about when to see a dentist. You’ve done the NAM (or haven’t), and the baby doesn’t have any teeth yet. And when he or she does start having teeth come in, they are just baby teeth and eventually fall out. So a dentist appointment really isn’t necessary yet, right?
I think you know where I’m going with this.
OK, so when should we do the first dental visit?
All children should have their first dental visit as soon as the first tooth appears in the mouth OR before 1 year of age…whichever comes first.
And where?
Hopefully, your local Craniofacial Team can help direct you to a pediatric dentist who works with cleft children. The pediatric dentist is usually on the Craniofacial Team. However, the child’s doctor or nurse can give a recommendation as well.
What to prepare when you call:
It is good to have something rehearsed when you call so the pediatric dentist can be prepared for the visit. Choose a time for the appointment that works best for your child during the day. Have these things prepared to say:
- Calling to schedule your son’s/daughter’s first dental visit
- Mention:
- The child has a cleft and what type
- Any fears the child may have
- What the dentist/assistant can do to make the child more comfortable
- It may take longer to treat your child
- Can you bring a stuffed animal or favorite toy to the appointment?
- Is there a private area you can wait until you are seen by the dentist?
Now that the appointment is scheduled, you can prepare your child (and yourself).
Prior to the visit:
The best thing you can do is talk to your baby about the dentist in a positive way. Touch the baby’s mouth, playfully. Put your finger in the baby’s mouth and move it around while using an upbeat tone of voice.
- Prepare a list of medications the child takes.
- Have the child’s primary doctor’s name and address ready to give to the office.
- Bring a folder of the child’s records of surgeries and medical visits.
- Prepare a list of any questions you have about the baby’s mouth and teeth.
The day is here!
First Dental Visit:
This is an exciting time. You are creating a dental home for your child, which is so important because now you will have someone to call if a dental emergency occurs.
Bring your paperwork you prepared! Arrive at least 15 minutes early.
Make sure you reiterate what will make the child comfortable when you check-in at the front desk.
Most importantly, ASK QUESTIONS to the dentist like:
- Who to call if there is a dental emergency
- What you should be doing now to help care for the teeth
- How to clean the cleft area if debris gets stuck
- Is there an orthodontist you recommend who specializes in craniofacial patients?
- What kind of toothbrush should be used
- What toothpaste should be used
- Best snacks for healthy teeth
- General medications without added sugar
- What is normal and not normal in a cleft patient’s mouth
YOU DID GREAT!! And I’m sure your cleft baby did too.
Now, here is how you can care for the baby at home:
General Dental Care
Stick to these guidelines, and your baby will have healthy teeth and gums for life:
- Brush twice a day with fluoride toothpaste
- Drink water with fluoride in it
- Avoid sugary snacks and foods (anything with ingredients ending in -ose)
- Try different toothpastes until your child likes one
- DO NOT chew on food and offer to baby, or share utensils, cups, or toothbrushes
- This passes your oral bacteria to your baby, which can cause tooth decay
- Clean the pacifier with only water
- If the baby knocks a tooth out, put tooth in milk to bring to the dentist
- Take precautionary measures to avoid injury to face
- Be sure to have sealants done on permanent teeth to avoid dental decay
The dentist is so important! 🦷
You can be a huge advocate for your child by bringing him or her to the dentist regularly and by following the guidelines above.
AND your child will be more comfortable with oral healthcare as he or she gets older. Remember, oral health affects the body’s health. Caring for your child’s teeth contributes to a healthy body.
Keep up the great work! You are an awesome parent!!
Foods after Cleft Palate Surgery
Your baby’s cleft palate is repaired! It’s an exciting time, but it was so hard to get the baby to start eating solids before the repair. Many parents struggle with trying to figure out how to feed the baby after the palate surgery. 🍲
Before the cleft palate surgery
Some cleft palate children do better with small, soft foods before the palate repair. If your baby prefers soft foods over purees, the key is to make sure the food is not too smooth but also not too chunky for the little one. Using the back of the fork to mash these foods or a potato masher are perfect. The reason some cleft babies prefer soft foods over pureed are because it is harder for the soft foods to lodge into the cleft area. These foods include, but are not limited to:
- sweet potato
- pasta
- beans
- vegetables
- meat
- bananas
- pears
- apples
- scrambled eggs
Other babies prefer pureed foods.🥣 In that case, you would just steam or bake the above foods and puree them in a blender. The issue with pureed foods is they tend to go through the cleft and out of the nose. So if you are struggling with this, definitely try softer foods and you can research Baby-Led Weaning.
After the cleft palate surgery
You feel like you’ve finally mastered feeding your baby solid foods, and now you will have to change some things because of the cleft palate surgery.
But don’t worry! It’s only for a few weeks
And, you might find that after the repair, your baby will want to eat pretty much anything! For example, if your baby only wanted solid soft foods before, purees may be an option now that the repair is complete.
The cleft palate repair is a very important step and also a very exciting one.
After the repair, it is crucial that no: 👎
bottles, pacifiers, or fingers
touch the roof of the baby’s mouth. The baby should not chew on anything at all. This information is usually advised for the first 3 weeks, but every doctor is different.
When feeding the baby, use the side of the spoon to drip the liquid into the baby’s mouth so the spoon does not touch the palate. A small cup can also be used to drip the liquid into the baby’s mouth. Also, after each feeding, give the baby water to drink to rinse the surgical site. As always, nothing too hot, as this could cause damage to the surgical site.
First week
- broth
- milk
- juice
Second week
- yogurts
- pureed baby foods
- soft cereals
Third week
- Resume normal foods…
- just be careful!
The no-no’s (splints on the arms) should be worn for about 2 weeks to avoid any fingers in the mouth or the child putting any object in the mouth. The arm restraints must be worn at all times unless your doctor tells you otherwise.
Now for the fun stuff…
Let’s do a recipe!
Pumpkin Chicken Baby Food Puree
Made with pumpkin, chicken, parsnips and ginger for a fun and nutritious take on the tastes of the season.
Ingredients
- 1/4 cup pumpkin puree
- 1/4 lb boneless skinless chicken breast
- 1 parsnip peel & roughly chop
- 1/4 inch ginger finely grated
- 1-2 cups liquids water, breast milk, etc
Instructions
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Preheat oven to 350 degrees F. Line a baking sheet with tinfoil or a silicon mat.
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Lay a large piece of tin foil on top of a cutting board or counter. Place the chicken breast and parsnips onto the piece of foil. Wrap chicken and parsnips up tightly in the foil like a package, leaving the seams of the foil at the top. Place onto the baking sheet.
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Place the baking sheet in the oven and bake for 30 minutes.
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Remove the chicken tin foil packet and let cool.
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Cut chicken into cubes.
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Place the chicken, parsnips, pumpkin and ginger into a blender or food processor and puree for 1-2 minutes, adding in 1/4 cup of liquid at a time if needed.
Recipe Notes
Fridge – store in an airtight container in the fridge for 3-4 days. Freezer – can be frozen for up to 4 months (this and this are my favorite freezer storage containers).
Babyfoode.com is one of my favorite resources for healthy, nutritious baby food and advice! It is not specifically for cleft babies, but just follow my guidelines above on how to prepare these foods, whether they are pureed or soft. Let’s look at a recipe for a pureed food!
Breastfeeding & Bottle Feeding
Can I breastfeed my cleft baby?
This is a common question with new moms. After all, we know that breastfeeding has many benefits both for the mother and the baby, including but not limited to:
- protects against allergies
- easier on the baby’s stomach than formula
- reduces risk of viruses and bacterial infections
- reduces risk of ovarian and breast cancer in moms
- more rapid uterine healing for mom
- bonding with baby
Breastfeeding exclusively is recommended for the baby’s first 6 months of life. Breastfeeding is HARD, whether the baby has a cleft or not. So it’s important to realize that and not be quick to give up.
I just recently attended a Craniofacial Meeting where the presenter, a speech pathologist, discussed breastfeeding and bottle feeding cleft babies.
She mentioned how babies with a cleft lip only are usually able to breastfeed successfully. The only thing that needs to happen in order to do so is a seal. Babies, surprisingly, with a cleft lip are able to create a seal around the nipple, regardless of the cleft in the lip.
The seal is created by the breast or mom’s finger.
A hissing sound Indicates the seal is not adequate. At this point, it is important to reposition the baby to create the proper seal.
What about cleft palate babies?
This is a little more difficult. Sometimes, if the cleft palate is smaller, the breast may be able to cover the palate. In many situations though, a bottle is needed to for this task. The reason is because it is difficult for the baby to create a suction.
Feeding your baby expressed breast milk will still offer the many benefits of breastfeeding, including reduced middle ear infections, which are common in cleft babies!
Bottles for cleft babies
There are many options out there for bottle feeding your cleft baby, but the most successful ones are as follows:
Special Needs Feeder by Medela
This is nice because you can control the flow rate just by squeezing on the bottle. This is important because since the baby cannot suck by himself, you can help express the milk for the baby.
There are 3 different flows for this bottle. The valve is sensitive to the baby’s feeding, even with the weakest amount of sucking, and completely closes when the baby pauses sucking.
It is so important to get help from a Cleft Nurse Specialist regarding bottle feeding. The nurses in the hospital do not use this bottle every day, so it’s best to receive training from those who are experts with these bottles.
Dr. Brown’s Specialty Feeding System with a One-way Valve
This bottle looks exactly like the normal Dr. Brown’s bottles, but it has a valve that is inserted into the bottle. The valve works the same way as the Medela bottle, where it helps the infant with self-regulation during the feedings.
The only difficulty with this bottle is that there are many parts, so it may be hard at first to assemble all the pieces.
The difference between this bottle and the Medela is that you do not squeeze the milk into the baby’s mouth. The bottle releases the bolus of milk without a squeezing mechanism, so it helps with self-regulation.
Watch this video for a tutorial.
My Story
I don’t know much about how I was fed as a baby, but I know there were only 2 people who were able to successfully feed me: my mom and grandma.
My mom would constantly tell me stories about how they had to feed me from a cup. I’m not sure if these specialty bottles were as prevalent when I was young, but I was not fed from a bottle.
They would use a medicine cup and fill it with formula and slowly drip it into my mouth. This seems very tedious and difficult! I’m glad these bottles are a resource for families now.
As always, please feel free to comment or reach out to me about a topic you’d like more information on. Thank you for reading!