Yes!!

A little over 6 months ago, my husband and I had a baby girl, and we named her Zoe. We love the name because it means “life” in Greek. When I found out I was pregnant, of course one of the first things we thought of…

What if she is born with a cleft?

OK, well if she is, she will be born into the best family to help her, with a mother who had a cleft lip and palate and a prosthodontist..and a father who is a maxillofacial prosthodontist. She will be fine! 

But also, on the other hand, my mind jumped to all of the terrible situations I had to go through in my life, and I would hate to see my daughter go through those things too. From surgeries to social situations, I don’t know if I could handle it.

Let’s talk facts.

What are the chances she will have a cleft, according to science?¹

1. If one parent has a cleft, 2-8% of the children could have a cleft too
2. If one cleft parent has a sibling or parent with a cleft also, that number jumps to 10-20% of the children having a cleft

Option 1 applies to me.

But, as we know from the blog post about causes, clefts are not really simple when it comes to the factors that cause them. It’s a multifactorial situation. Experts say it is almost impossible to predict without a wide range of insight into a person’s genetic history. Clefts can also be associated with a syndrome, which affects how much more likely it is that it will be passed on.

When can I find out if she has a cleft?

A normal ultrasound is not able to detect the presence of a cleft very well. Sometimes, of course, it could be detected as early as the 13th week in utero on a scan.

But, I ended up having to get a 3D/4D scan in order to determine if the baby has a cleft. This is done at the 20-week anatomy scan…which is also the scan that determines if you are having a boy or girl! 

*when the baby is born, your midwife or doctor will put their finger in the baby’s mouth to feel for a cleft palate

And at this scan, only a cleft lip can really be seen. Since 60% of cleft lips are accompanied by a cleft palate, most people prefer to assume the baby also has a cleft palate if the cleft lip is seen on the anatomy scan. 

*when the baby is born, your midwife or doctor will put their finger in the baby’s mouth to feel for a cleft palate

And then what happens?

You can either choose to undergo amniocentesis, where amniotic fluid is extracted during the pregnancy to test for any additional syndromes that may be associated with cleft lip and palate.

OR

You can refuse amniocentesis since it is a rather invasive procedure, involving a large needle.

What you definitely should do, though, is FIND YOUR LOCAL CRANIOFACIAL TEAM. Meet the doctors, so you can be as prepared as possible for how to care for your cleft baby once he/she enters the world. 

My Story

My husband and I went to our 20-week anatomy scan at Dr. Laurel White’s office, where she has beautiful, top-notch equipment for these ultrasounds. I was soooo nervous. Paul & I held hands the whole time and just waited. 

As soon as the sonographer reached the face, she said,

“Look at the lip, girlfriend!”

The baby’s lip was fully intact, and of course, I burst into tears. It was a beautiful moment that I got to share with my husband! I’ll never forget that feeling.

I ended up going the home birth route with a midwife, Fika Midwifery. It was the best experience I could have hoped for. I have no scary stories to share, and I encourage all pregnant women to embrace birth, and just go for it!

Zoe Dora is almost 7 months old now, and she loves laughing at her daddy, getting kisses from mommy, and cuddling. 

There is still a 2-8% chance I can have a child with a cleft in the future, but I know we could handle it if that’s where life took us. 

¹Cleft lip and Palate Association.

You guys asked some great questions!   The questions I received were all dental questions, so I will be doing another post on non-dental FAQs as well! I did my best here to answer your questions, especially the ones that were asked the most. I’ll be happy to add to this post if any other questions come up as you’re browsing.

This blog is completely for you guys, so I hope these answers help! Let’s dive in!

My son’s adult front tooth grew in sideways. When and how will that get fixed?

This is actually pretty common in cleft patients for the teeth to grow in sideways next to the cleft. The reason for this is that teeth like to migrate and grow towards SPACE. Wherever there is room, the teeth tend to go. Most of the time, this will happen when the corresponding baby tooth is still in the mouth. The adult tooth will grow toward the space of the cleft because it can sense there is room for it to grow! The tooth will be fixed during orthodontia. Braces will move the teeth into their proper positions around the age of 11-14. This is done after the bone graft procedure.

My daughter is 1 month old. How many teeth can I expect in the coming months?

4-7 months: The first teeth will most likely be the two lower front teeth, but teeth can also begin appearing around 3 months old.

8-12 months: The front top teeth will appear around this time. In cleft patients, both front top teeth may not erupt due to the cleft being in this area. That is normal.

9-16 months: Next, the front top teeth next to the central incisors will erupt. Again, in cleft patients, this may not erupt because there is no bone in this area. That is also normal. Next, the lower lateral incisors will erupt (the teeth next to the central incisors).

13-19 months: The molars will erupt.

16-23 months: Canines will erupt.

23-33 months: Second molars will erupt.

Do not worry too much if the teeth do not arrive during these time frames. Especially with cleft patients, there can be delayed eruption of the teeth. The teeth will erupt when they are ready!

What is the average lifespan of dental implants? Do you usually have to get them redone?

Dental implants can last decades if you take good care of them. They are always placed with the intent of having them last even your lifetime. The best way to take care of them is to make sure you are flossing around them, and also, I highly recommend a Waterpik.  The implants do not normally need to be replaced unless an infection develops around them, bone loss, or periodontal disease affects them. What is more likely to occur is that as you get older, you will notice the teeth with implants on them will appear shorter than the teeth next to them. This is because your face grows, but the implants stay in one spot. If this is bothersome to you, only the crown will need to be replaced…not the implant!

My baby has a gum notch. What procedures could be involved?

I’m assuming that by “gum notch” you mean a defect in the bone where the cleft is. Possible procedures include bone grafting, orthodontics, and others, depending on the type of cleft your child has. A good post to look at is the Timeline of Events one.  This should help!

Does having a gum notch mean her teeth will become rotten?

No! Having a cleft does not predispose patients to having rotten teeth. Having a cleft merely means there will be some difficulties with teeth, such as later eruption or no eruption at all in the area of the cleft. This does not mean cleft patients will definitely lose teeth. Most cleft patients just don’t have their front adult teeth, and THESE options can be explored if that is the case. As long as you take care of your teeth, you will not lose them!

My 3-year-old son has a transparent spot on his front tooth. Is there anything I can do for his future teeth?

This sounds to me like it is just a thin spot of enamel. If it’s just one spot, it does not sound alarming. Sometimes, there can be the opposite effect where there is a white spot. These spots are not worrisome at all. The enamel is weaker in these areas, so just keep an eye on these for any appearance of a cavity. As for the future teeth, this can happen in any of those teeth as well and are not related to the baby teeth. It may happen in the adult teeth, or it may not happen, but there is no way to prevent it. Just make sure to do proper hygiene to reduce the risk of cavities!

Are clefts associated with weak tooth enamel or something that would predispose to decay? Should I be concerned about his adult teeth?

Clefts are not associated with weak tooth enamel. One interesting characteristic of cleft patients though is that we are mouth breathers much of the time because we do not breathe well through our noses. This can create a dry environment in the mouth, which can lead to decay. This is because saliva has certain elements in it that protect the teeth from harmful bacteria. The way to prevent decay is proper hygiene and also drinking water to keep the mouth salivating will help!

 My baby has gum notch. What is the procedure for the gum notch?

Again, I’m assuming here the gum notch means a defect in the bone where the cleft is. This area will remain as is until about the age of 10, when the fistula is finally closed with the bone graft. I explain all about the bone graft in THIS POST.

Will babies with clefts suffer with teething?

Yes! Just like any other baby, though. That part is completely normal.

Some skin on the upper lip is joined with the gum notch on my baby. How will it be normal?

This sounds like the frenulum attachment. This is just a muscle attachment that occurs in people without clefts too. It is not a bad thing, but it could pull on the muscle between the 2 front teeth if not removed, leading to a space between the two front teeth. It can be cut at any age, if you would like.

Will having a cleft of the soft palate only cause any tooth problems?

Usually there are no tooth problems with clefts of the soft palate. The only tooth problems are the ones that those without cleft palate would experience!

Does having a cleft lip & palate mean they will need a palate expander down the road?

Usually, a palatal expander is a good idea because due to the surgeries of the palate, the scar tissue pulls on the teeth and jaw and constricts the upper jaw. The constriction causes an inaccuracy in the bite of the cleft patient. An expander will help expand the palate to achieve more space in the arch to make up for the constriction that has occurred.

My cleft child has a tooth coming through her palate. Will this cause any issues with her palate repair?

This is actually very common in cleft patients. It would only cause an issue with palate repair if it is in the way of where tissue in the palate will be taken to do the repair. Usually, the tooth will be extracted at time of palate repair, especially if it is so far from the rest of the teeth that there is no way orthodontia could fix it.

Where can I find an orthodontist for my cleft child? 

Search for “craniofacial orthodontist” in your area!

What is your take on snap-in dentures, and are there any problems with them?

Snap-in dentures are absolutely wonderful. They are actually considered the gold standard for dentures on the lower jaw. Two implants are sufficient for snapping in the denture, and they help to hold the denture in one spot! This is especially helpful if you don’t have much bone in the lower jaw from wearing dentures for so long. The dentist just needs to make sure you have enough bone for implant placement! Snap-in dentures are not necessary in the upper jaw, unless there is some abnormality in the maxilla. The most common complication with these dentures are that the little buttons on the inside of the denture where the implants snap in actually wear over time, so they need to be replaced. Another common complication is the denture may break in half between the two snaps. These complications are nothing though compared to how your life will be changed for the better!

Is it common to miss other teeth not in cleft areas?

Yes, but this is unrelated to the cleft. People will commonly miss lateral incisors or premolars.

Is it common to have a frenulum connecting a cleft child’s upper lip to the gums in the area of the cleft?

This is also not cleft related, but can happen in cleft patients as often as it does in non-cleft patients. Please refer to question above regarding frenulum!

Does an expander cause a fistula in the cleft area?

No! The upper jaw in a cleft patient is usually constricted because of scar tissue pulling on the jaw from previous surgeries. This constriction will make the fistula appear smaller. As the palate is expanded, the fistula will appear larger. An expander just draws more attention to a fistula that was already there!  Also, a fistula is left in the cleft area until the bone grafting procedure is done, which is usually right after palatal expansion.

How many hours in dental school are spent learning about cleft-related issues? What is the knowledge-base of an average dentist regarding clefts?

Honestly, not much. We learn about what it involves and how it develops in the womb. We don’t learn about specifics in treating cleft patients. So, an average general dentist knows what a cleft lip & palate is, knows which teeth are affected, and in general, knows what steps need to be done to repair the cleft. However, specialists, including oral surgeons, orthodontists, pediatric dentists, and prosthodontists, all have a strong knowledge-base regarding clefts. We treat these patients during our residencies as well, so we know how to deal with cleft patients in detail. A  toddler will be treated by oral surgeons, pediatric dentists, and a maxillofacial prosthodontist. Young children will be treated by oral surgeons, pediatric dentists, and an orthodontist. Adults will be treated by a prosthodontist, oral surgeon, and a general dentist can also treat an adult with a cleft.

 

That was fun!  Thank you so much for submitting your questions! Please feel free to submit follow-up questions in the comments section, below.