Category: General

Psychosocial Factors

Psychosocial Factors

Posted on by The Cleft Dentist

Our noses and mouths are involved in so much more than we think

Cleft lip + palate not only affects how we look, but it also affects function.

Where?

Eating, breathing, hearing, speaking, the list goes on.

Considering these are things we do every day, and some of them are necessary for survival, the life of a cleft lip + palate patient can get complicated.

And unfortunately, experiencing these issues can lead to tremendous psychosocial issues for a child and even adults.

Since much of a cleft lip + palate patient’s life is focused on mending the physical issues, psychological issues tend to be neglected. In my opinion, treatment should only be considered a success if the patient is physically and psychologically strong.

Not only are the surgeries confusing and a lot for a child to endure but also the social effects from being seen as different at school and at home are difficult for children to go through.

Studies have shown that even though cleft lip + palate does not have a major psychological impact as the child becomes an adult, the child still has psychological issues including behavioral issues, dissatisfaction with facial appearance, and symptoms of anxiety and depression.¹

Negative responses from outsiders regarding appearance or speech can adversely affect self-image. Issues with the nose and teeth are specifically the areas of concern when it comes to body image for these patients.²

In a study by Khargekar et al.³ that evaluated the psychological factors associated with cleft lip + palate patients, it was found that:

  1. Most patients are aware of the problem after 6 years of age.
  2. Patients felt they are specially treated by parents when compared to siblings.
  3. Patients are teased by siblings.
  4. Parents of patients with clefts are more tolerant of misbehavior in their child.
  5. Being teased in school and having difficulty in communication hindered social interactions>>this resulted in cleft patients not being comfortable with new people, having a loss of confidence in job interviews, and difficulties in marriage due to lower self-esteem.
  6. Patients are not satisfied with the treatment outcome.
  7. Unrealistic expectations from surgery result in dissatisfied patients.

It is no surprise that attractive people are seen as brighter, having more positive social behavior, and receive more positive treatment than their less attractive counterparts.⁴ It was even proven in a study! In some ways, it is not even the fault of the observer…I was taught in an art class I took in college that the human eye needs to see a certain level of facial symmetry, and if one thing is just a little bit off, we, as humans, do a double-take and may consider the asymmetry as unattractive. For most cleft lip + palate patients, symmetry is just not something we can ever attain.

And the worst part is…

We know we aren’t symmetrical. We know people will do double-takes. And that is hard. That makes us want to put our heads down. That makes us want to make sure we are smiling all the time in an effort to not draw attention to the scars on our faces. That makes us scared to talk in front of a large group of people. And that makes it hard for us to make friends.

What can be done to help?

  1. Social workers need to be part of the craniofacial team.

      • It is never too early for the patient to speak to someone about how he or she is feeling and about any difficulties, psychologically, the patient is going through.

     

  2. Continued speech therapy is an integral part of treatment for the cleft patient.

      • It seems as though many patients undergo early speech therapy but do not continue while getting older. Continued speech therapy and secondary speech evaluations are very important and can help build the patient’s self-image and self-confidence.

     

  3. Positive reinforcement from parents is essential.

      • I cannot emphasize enough how important it is for parents to constantly remind their children they are smart before they are beautiful. Intelligence, bravery, and accomplishments should be portrayed as more important qualities rather than drawing attention to physical characteristics.

     

  4. Realistic expectations from surgeries need to be discussed.¹

    • Many patients are given the assumption that the surgeries will correct any physical malformations they have. As a result, too much emphasis is placed on these surgeries, and unrealistic expectations are a result. Doctors need to make sure patients understand what the outcomes of the surgeries will be.

My experience

My earliest memory of feeling different is from 1st grade, when I had a nose surgery, and I went to school with bandages on my face. I remember my teacher giving me special attention and letting me sit on her lap during story time. While this was a nice gesture, I have since taken the idea with me that I can get things in life by letting people feel sorry for me. My parents have even admitted to me that they give me special treatment because of what I have been through. At the time, it was nice to know I was being treated special, but I wish I was just treated like everyone else.

The most common comment I’ve heard from people towards me is that I look sad when I’m not smiling, and people are constantly asking me if I’m upset about something. That is one of the most frustrating things for me because at rest, my face just looks different because it’s asymmetrical. People view that as sad. I find myself feeling the pressure from other people to constantly be smiling just so it doesn’t draw attention to the differences in my face.

I’ve also been bullied my whole life for the asymmetry in my nose and the way my voice sounds. These experiences have seriously affected my life. I didn’t have any true friends until high school, and I still struggle making friends today. Every time I see a picture of myself, I first look at my nose, and I hate photos that are taken straight on. I also despise hearing my voice in a video recording, and I lack self-confidence on the phone.

I’m now 29 years old and remember vividly all the times I have been made fun of. These experiences stay with us as adults and shape us into the people we become.

It does get better, but it is impossible to forget my past.

It is so important to follow the guidelines listed above that stem from my personal experiences. I hope I can help other children understand that their minds will always be more important than their physical qualities, and I hope they can gain a positive self-image in that way.

The support from my family and friends has meant more to me than they could ever imagine. They make me feel like it’s okay to be me, regardless of what I look like or sound like.

 

¹Hunt, Orlagh & Burden, Donald & Hepper, Peter & Johnston, Chris 2005. The psychosocial effects of cleft lip and palate: A systematic review. European journal of orthodontics 27. 274-85
²Tyl J, Dytrych Z, Helclová H, Scüller V, Matĕjcĕk Z, Beránková A 1990. Psychic and social stress of children with cleft lip and palate. Ceskoslovenska Pediatrie 45: 532–536 
³Nitin Khargekar, Naveen Khargekar, Vandana Khargekar, Surabhi Rajan 2016. Cleft Lip and Palate- A Psychology Insight. Science Journal of Clinical Medicine. Special Issue: Clinical Conspectus on Cleft Deformities. 5(4-1):37-40
⁴Dion, K., Berscheid, E., & Walster, E. 1972. What is beautiful is good. Journal of Personality and Social Psychology. 24(3):285-290.

 

Environmental Factors

Environmental Factors

Posted on by The Cleft Dentist

If cleft lip & palate does not run in my family, where is it coming from?

Non-syndromic cleft lip & palate does not always depend on genetics. 

The cause could be ENVIRONMENTAL .

What does this mean?

When the baby is born with an isolated cleft lip + palate (non-syndromic), the environment, rather than the baby’s actual genes could played a role. There may have been trauma or some disturbance in the womb during the time when the palate and lip develop in the fetus .

Just to name a few: smoking, alcohol, diet quality, folic acid, exposure to chemicals, and parental age could increase the risk of cleft lip + palate.  Often, the cause is a blend of genetic and environmental factors, but here, I want to focus on environmental factors because these are potentially things we can CONTROL.

Craniofacial development is the result of a number of signaling pathways and is extremely complex. If this is interrupted for any reason, there can be a failure of fusion of the facial structures . 

When does this happen?

This occurs between the 6th and 8th week of pregnancy .

OK, how does this happen?

  1. Smoking¹
    • Mothers who smoke more than 25 cigarettes a day double the risk of having a child with cleft lip + palate
      • This is especially the case when mothers smoke during the first trimester of pregnancy (when the facial structures are developing)
    • Exposure to smoking does not affect the chances of having a child with cleft lip + palate
  2. Alcohol consumption²
    • Mothers who consume alcohol at high levels (more than 5 drinks at a time) during the first trimester of pregnancy increase the risk of having a child with cleft lip + palate 
  3. Age³
    • Mothers over the age of 40 increase the risk of having a child with cleft lip + palate
    • Mothers between the ages of 30 and 39 increase the risk of having a child with cleft palate, only
    • This could be due to the fact that mothers who are older have been around environmental toxins longer than a mother who is younger
  4. Diet⁴
    • Deficiencies in folate, niacin, thiamin, vitamins B6 and B12, riboflavin, zinc, amino acids, and carbohydrate are linked to cleft lip + palate
      • This is especially true during the time of conception and the year leading up to pregnancy
  5. Chemicals 
    • Women exposed to solvents like paints, varnishes, dyes, gasoline, cosmetics increase the risk of having a child with cleft lip + palate⁵ 
      • Women working as laboratory technicians, beauticians, hairdressers, and cleaners are especially prone to exposure to these chemicals
    • There is limited evidence regarding effect of pesticides and herbicides, but it has been found that:
      • Men working with pesticides increase the chance of having a child with cleft lip + palate⁶

How it can be prevented:

  1. Avoid smoking and alcohol during pregnancy, especially during the first trimester.
  2. Be aware that pregnancies later in life could potentially increase your risk of having a child with cleft lip + palate.
  3. Have a full, complete, nutritional diet with plenty of proteins, healthy fats, and carbohydrates. Folic acid supplements are especially beneficial.
  4. Avoid exposure to solvents, especially during the first trimester.

My story:

I have one older sister, Kristen, and she is 5 years older than me because my mother had 3 miscarriages after Kristen was born . When my parents found out they were pregnant after the 3 miscarriages, they were ecstatic! The doctor had said they were going to have triplets, but at the 8-week mark, the ultrasound had shown 2 non-viable sacs and 1 sac with a beating heart (that’s me!) . 

My parents did not know I would be born with a cleft lip + palate, but it is assumed that due to the loss of the other embryos, there was a disturbance in my mom’s womb, causing an issue with the fusion of my facial structures. 

Of course, this is an example of an environmental factor where the issue could not be controlled. So it is important to realize these things can definitely be beyond our power, whether we try to prevent these things from happening or not. 

I think it is so important to control what we can and realize that all we can do is try our best!

¹Honein MA, Rasmussen SA, Reefhuis J, Romitti PA, Lammer EJ, Sun L, et al. Maternal smoking and environmental tobacco smoke exposure and the risk of orofacial clefts. Epidemiology 2007;18:226-33.
²Boyles AL, DeRoo LA, Lie RT, Taylor JA, Jugessur A, Murray JC, et al. Maternal alcohol consumption, alcohol metabolism genes, and the risk of oral clefts: A population-based case-control study in Norway, 1996-2001. Am J Epidemiol 2010;172:924-31. 
³Herkrath AP, Herkrath FJ, Rebelo MA, Vettore MV. Parental age as a risk factor for non-syndromic oral clefts: A meta-analysis.Cleft lip and palate: Volpato, et al.J Dent 2012;40:3-14. 
⁴Krapels IP, van Rooij IA, Ocké MC, West CE, van der Horst CM, Steegers-Theunissen RP. Maternal nutritional status and the risk for orofacial cleft offspring in humans. J Nutr 2004;134:3106-13. 
⁵Garlantézec R, Monfort C, Rouget F, Cordier S. Maternal occupational exposure to solvents and congenital malformations: A prospective study in the general population. Occup Environ Med 2009;66:456-63. 
⁶Shaw GM, Wasserman CR, O’Malley CD, Nelson V, Jackson RJ.Volpato, et al. Cleft lip and palate: Maternal pesticide exposure from multiple sources andselected congenital anomalies. Epidemiology 1999;10:60-6.
Timeline of Events

Timeline of Events

Posted on by The Cleft Dentist

One of the biggest questions I get as a practitioner is: When can I expect to have my next surgery?

And an even more frequent question I get is: When will this all be over, so I can feel normal?

These questions are completely expected and customary because I remember that anxious feeling I would get as a patient when I would attend the Monday night, once-a-month craniofacial team appointment at WNY Children’s Hospital with my parents. I always wanted to know when the next surgery was so I could prepare for it, but I also remember having clammy hands just thinking about having to go through the general anesthesia and whatever recovery might mean for this particular surgery.

If you are a cleft patient, my guide will help you prepare for your next steps so you can know what to expect and when. Also, it should help steer you in the right direction for when you are unsure of what type of doctor you should be seeing.

If you are a parent of a cleft patient, and you were anything like my parents, I know you will find my guide helpful because this is completely new for you. My parents always wanted to be strong for me, and I know it would have helped even more if they knew what to expect over the course of their child’s treatment for when things would occur.

Below is a simplified outline for when you can expect to have certain procedures and also when I recommend you should be seeing certain doctors. These times are approximate and will vary for each individual, so please keep that in mind. Also, I will do blog posts on each aspect of treatment, so the following guideline is simplified and meant to be used as a quick cheat sheet for reference. This timeline is also assuming that each surgery has been successful.

Cleft Lip & Palate Treatment Timeline:

1st week of life: NAM (Nasoalveolar molding) Appliance

An orthodontic device that helps to shape and improve the position of the nose. Adjusted every week by pediatric dentist.

~3 months: Cleft Lip Repair

The Rule of 10s: Surgery is performed when the patient at least 10 weeks old, 10 pounds, and has a hemoglobin count of at least 10 grams

~4 months: Obturator Fabrication

A maxillofacial prosthodontist makes this. It restores the separation between the nose and mouth.

~10 months: Cleft Palate Repair AND Tubes in Ears

I recommend having these done at the same time to avoid 2 surgeries. The cleft palate repair is done by an oral surgeon, and the tubes are placed by an ear, nose, & throat doctor.

~18 months: Speech Evaluation

Speech therapists will evaluate speech & child will be in speech therapy until about 5 years old.

~3 years old: Craniofacial Clinic visits

The patient will start meeting with the craniofacial team annually.

~4 years old: Secondary Speech Evaluation

A speech pathologist will evaluate if a surgery is needed for the palate to improve speech or if speech therapy should be continued.

~5 years old: Lip/Nose Revision

The plastic surgeon will revise the lip and/or nose if it is necessary.

~8 years old: Rapid Palatal Expansion

An orthodontist will begin treatment at this point. Usually, an RPE is done first to expand the palate that is constricted due to scar tissue.

~10 years old: Alveolar Bone Graft

An oral surgeon will use bone from the hip to build up the defect at the gumline.

~11-18 years old: Braces

The orthodontist will continue treatment & can place false teeth on the braces to fill in the missing teeth.

~18 years old: Orthognathic Surgery

This surgery is performed by the oral surgeon. If there is a discrepancy in the bite, the jaw will be moved so the upper jaw and lower jaw come together correctly.

~19 years old: Nose Reconstruction

The plastic surgeon performs this surgery to correct the misalignment of the nose.

~19 years old: Flipper Fabrication

A prosthodontist is essential as soon as braces are removed. The prosthodontist will make a prosthetic device to replace the missing teeth until a definitive treatment plan is decided upon.

~21 years old: Dental Implant Placement

Dental implants should be planned by the prosthodontist and placed by the oral surgeon. These will take 2 months to heal before crowns can be placed on them.

 

 

Of course, there are alternatives to some of the treatments listed above. For example, instead of dental implants, a patient may decide a removable partial denture or fixed partial denture would be a better option in his or her particular situation. I will address specifics in later posts, but please feel free to ask any questions or comment on what you would like to be added below!

Thanks for visiting

Hello World!

Hello World!

Posted on by The Cleft Dentist

I’m very excited to start this journey with you. I am a Buffalo, NY native, and I’m currently residing in the beautiful and amazing city of Los Angeles. I was born with a unilateral cleft lip and complete cleft palate. At this point, I have lost count of the number of surgeries I’ve had for the defects. My earliest surgery was when I was 2 months old, which was for the lip closure, and my latest surgery was about 2 months ago, which was due to a failing bone graft and consequently, failing dental implants after 10 years… but we can get more into that topic later. In between those, there have been around 20 surgeries including nose reconstruction, lip reconstruction, bone grafting, tubes in ears, and a perforated eardrum.

My incredible craniofacial team in Buffalo, NY was absolutely amazing and did such a great job with combining surgeries when possible and also with making me feel like I was part of a special family. Because of my experiences, I always knew I wanted to be in the medical field for my career choice. It wasn’t until I was at the tail end of my treatment that I realized exactly what I wanted to do. This was around the time I had finally had a successful bone grafting surgery to augment my alveolar bone defect from the cleft (bone was placed where my cleft defect was in the front and roof of my mouth), and I was ready for a final treatment plan for my missing right lateral and central incisors (front teeth on the right side). I was blown away by the organization and options presented to me by my prosthodontist (specialist in dentistry, focusing on anything fake being made outside of the mouth and going into the mouth). My mom, who was my biggest supporter, and I had decided to go with the option of dental implants and crowns.

After about a year of treatment, I could not believe how “normal” I felt with my new teeth. My confidence had soared, and I felt like I was finally able to live a more normal life, being able to bite into food and smiling without hesitation. What my prosthodontist did for me was much more than just provide me with a new smile. That was when I knew I wanted to be a prosthodontist.

I received my Bachelor of Science degree from SUNY Geneseo, and I went to dental school at University at Buffalo School of Dental Medicine, which was where I met my now-husband, Paul. Both Paul and I then went on for our residencies in Prosthodontics at West Virginia University School of Dentistry, where we also received our Master’s degrees. We have now been married for almost 3 years! Paul is the kindest, most loving, and supportive husband. We are currently in Los Angeles so he can complete his Maxillofacial Prosthetics training at UCLA. If you’ve ever had an obturator to close your palate due to a cleft defect (or any other defect), a maxillofacial prosthodontist is the one who does it! The fellowship is a year long, and after the year is up, we are moving back to Buffalo, NY to finally settle down.

 
I have always wanted to be an aid for patients going through cleft lip and palate treatment. I would like to share my own experiences as well as case reports of patients that I see in my own practice. It is my hope that this blog will help bridge the gap between patients and the craniofacial team to help patients know and understand the next steps in their treatment and what to expect while healing. I will also be doing a “Fun Fact Friday,” when I will be sharing products or recipes that I recommend to help the healing process.
 
Take a look around, and feel free to ask any questions you may have. Thank you for visiting!
 
And you can find me HERE and HERE. Say hi !