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Parenting a Child with a Cleft: 10 Things Every Parent Should Know

CPF welcomes guest blogger, 20-year-old Sarah Stone. Born with a cleft lip and palate, Sarah shares some of her experiences with cleft care via her blog, Fearless Face. Sarah is a 3rd year university student in Ottawa, Ontario where she studies communication.

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Sarah and her parents.

10.Your child is just like everyone else.S/he has 10 fingers, 10 toes, and 2 arms. Your child also has a smile. It just needs to be fixed.

   9. You don’t need to feel guilty. It’s not your fault and there is nothing you can do about it except be there for them. There are support groups that are available if you need to seek help. But your child probably doesn’t blame you or hasn’t even considered it. They love you just as much as you love them.

http://www.nationwidechildrens.org/cleft-lip-palate-support-group
http://www.cleftadvocate.org/ftfc.html
http://www.cleftsmile.org/#1
http://www.cleftline.org/parents-individuals/publications/support/

  8. Learn to be patient. Feeding won’t be easy and your journey will be longer than a day.

  7. Never make fun of your child’s appearance. NEVER agree with what a bully said. The “yeah, it does look like you hit your lip” isn’t going to boost their confidence.

  6. Surgeries are scary for anyone. The best thing you can do is find something that calms them. In my opinion, I love it when my mom rubs my arm before going in the surgery room, even though I’m in my 20’s. It’s comforting but distracting at the same time.

  5. Encourage your child to be active in school and extra activities. It’s easy to hide at home, but it’s more fun to be active and make friends and feel proud of yourself. Achieving something like a soccer goal or dance recital will allow them to gain confidence.

  4. If your child has a bully, it’s best NOT to go to the school and make a scene. It often makes the situation worse. The best advice my parents gave me is that people who bully often have insecurities and need to feel powerful. In my own experience, I’ve seen the same people get bullied themselves. Teach them that good people get far in life while bad will not succeed. When your child grows older,  they will see how accurate this is. They should still tell an adult about the bully, but teach them that they are better and above someone who needs to hurt other people.

  3. Don’t shut them out when they need someone to talk to. You may not want to hear it, but they do. And they need you. Thank them for opening up and expressing concerns and feelings because if they don’t trust you to listen then there will be greater problems down the road.

  2. When they are getting older, they will realize that they are different and ask questions. Repeat after me: “You were born with a birth defect. Your mouth was not completely formed when you were a baby in mom’s tummy. You are just like everyone else but will have to be stronger to overcome some hurdles.”

  1. Even if they don’t show it, they appreciate everything that you have done and given up for them.

–Sarah Stone

visit Sarah at her blog, Fearless Face

Arizona Diamondbacks Recognize Cleft & Craniofacial Team

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Yesenia and Dr. Beals on the big screen last night at Chase Field.

Last Monday (07.14) the Barrow Cleft and Craniofacial Center in Phoenix Arizona hosted a Girls’ Day Out, treating 12 patients to a day filled with facials, pedicures and hair styling.

A fine story on its own, it got even finer at last night’s Arizona Diamondbacks home game where Barrow and its co-director, Dr. Stephen Beals, were honored with a #HelloHumankindness award.  Accompanied to the field by 16 year old patient, Yesenia, Dr. Beals  shared a bit of Yesenia’s story with the Diamondbacks and their fans.

Cleft and craniofacial teams like Barrow care for their patients in so many ways that reach far beyond the doctor’s office or next procedure. Thanks to Barrow for the creative ways it cares for the whole person and to the Arizona Diamondbacks organization for helping raise awareness about people with clefts and the professionals who care for them.

Learn more about #HelloHumankindness, the Barrow Cleft and Craniofacial Center and the Arizona Diamondbacks.

Got a story about your team’s exceptional care? Please share!

A Good Question: “Will my dental insurance cover braces?”

The short answer is “No.” But your medical insurance probably will.

When we think of braces, what comes to mind? Middle-school? An overbite? Charming-but-crooked teeth?

For many kids with clefts, the use of orthodontia–braces–is an inevitable part of the long-term treatment plan, but not for the usual reasons we think of.

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Laurena 2014 CPF College Scholarship Recipient, shows off her smile and the sparkle of braces.

When indicated, orthodontic treatment prepares a patient for alveolar bone grafting of the cleft maxilla, for correcting malocclusions and for preparation of jaw surgery. In summary, orthodontic care may include primary orthopedic treatment in infancy and can extend through adulthood. –Parameters For Evaluation and Treatment of Patients withCleft Lip/Palate or OtherCraniofacial Anomalies, p. 20.

Okay, so that’s a mouth full. In other words, for kids with clefts, braces are a familiar tool used for what are probably unfamiliar purposes. And this is the challenge for families: When the treatment plan says it’s time for braces, insurance companies may see the claim as typical orthodontia–braces to help straighten teeth–when in the case of a cleft care treatment plan, it is a necessary part of care without which the remainder of treatment can’t move forward.

As you prepare for braces and the costs associated with them, keep in mind these general tips:

1) Orthodontia for cleft care should NOT be filed with dental insurance. Use dental insurance for routine cleaning and other dental care, but NOT for braces.

2) Orthodontia for cleft care SHOULD be filed with medical/health insurance.

3) Your orthodontist or surgeon should document medical necessity for the medical/health insurance claim.

4) Many orthodontists and surgeons may include their standard paperwork which often features a diagram of the mouth/teeth. Even without reading the details of the claim and documentation of medical necessity, a claim reviewer may deny that claim based on that diagram alone.

Is your family working with Medicaid? In many cases and in many states Medicaid will do a fine job of facilitating orthodontic care within the treatment plan. The bigger challenge is often finding a cleft-specializing orthodontist who also accepts Medicaid.

Whether you are working with private insurance, Medicaid or other resource, your cleft palate treatment team should be your go-to experts for filing insurance claims and communicating with insurance companies about this critical stage of care. An experienced treatment team will have worked through this process many, many times. Allow the team’s experience to help you learn the ropes.

What tips can you share with parents working with insurance for orthodontia?

Treatment Planning: Patients and Families Lead the Way

At the top of your summer reading list? How about, Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate and Other Craniofacial Anomalies. Although the 34-page booklet may not be on your bedside table, the long, difficult title is misleading:  The main characters happen to be your and your family!

Parameters outlines the contributions families make to best outcomes for their children's care.

Parameters outlines the contributions families make to best outcomes for their children’s care.

Combined, the words family and families appear more than 60 times in the Parameters booklet. You didn’t know that someone had written a book about you? Well, it’s with good reason! Patients and families lead the way for successful treatment planning and outcomes. In fact, among the basic principles that Parameters stands on is that:

The team should actively solicit family participation and collaboration in treatment planning. When the child is mature enough to do so, he or she should participate in treatment decisions. (Parameters, p. 8).

There are many great reasons that patients and families become active members of the treatment team. Dianne M. Altuna, a cleft-specializing speech pathologist, educator, and researcher in Dallas reminds us of perhaps the most important reason, “The parent knows their child the best.” Cleft-care professionals know a lot about clefts and other craniofacial issues. Parents know a lot about the child. When professionals and parents bring all that knowledge to the table, we’ve got the foundation for the best outcomes for care.

Dianne shares an example, “When trying to decide upon an imaging study for a younger child (Nasopharyngoscopy or Videoflourography), I always review the two studies with the parents. I ask them which study they think would be easier on their child.”

Another significant advantage to the parent-professionals team model is that professionals manage the long-term big picture while parents focus on what’s next. Why? Treatment planning for cleft and craniofacial care is often a complex, interwoven schedule of interventions spanning many years. It can change and evolve along with the child as he or she matures.  The team manages that dynamic, long-term treatment plan freeing the parent to focus on the many immediate care details and needs.

About the best parent-professional relationships, we often hear parents say things like, “If I have to think about the next 15 years, I get overwhelmed–but I can handle the next six months!” or, “Our team knows what he’ll need when he starts school but I don’t have to worry about that now, I can take care of what he needs in the meantime.”

What’s your role as a member of your child’s treatment team?

Connections Conference For the Win!

You’ve probably seen months of hype for our 2014 Connections Conference… and it was all for a reason!  What a fantastic day we had in Indianapolis!   The event brought a great turnout and between our fantastic keynote speakers, informative breakout sessions, and adorable therapy dog visitors, everyone left the day with big smiles.

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Connections was held at the Indianapolis Downtown Marriott and kick-started with an inspirational and entertaining keynote address by David Roche.  We were happy to have David and his wife, Marlena Blavin, join us for their third Connections Conference this year.  They are lovely people with a special heart for those affected by cleft and craniofacial conditions.  David and Marlena facilitated a workshop on the power of personal storytelling, which was a moving experience for many of our participants.  David and Marlena’s keynote comments also provided the perfect bookends to the day’s event.

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Other workshops covered a variety of topics, including:

  • Speech/language therapy for early childhood and elementary years (Theresa Snelling, MA, CCC-SLP)
  • Navigating the world of insurance and craniofacial care (Marilyn Cohen, LSLP)
  • The genetics of cleft and craniofacial issues (Howard Saal, MD)
  • What to do when people stare (Charlene Pell)
  • How to improve outcomes for children with craniofacial differences (Claudia Bellucci, MS)

Special thanks to the highly-qualified volunteers who led these workshops!  They were instructive and beneficial to all those who attended.

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Another highlight of the day was the Team Q&A Panel, where key specialty areas of a typical treatment team were represented and families had the opportunity ask questions and discuss their individual needs and concerns.  This year’s panelists included Claudia Bellucci, MS; Angela Dixon, MA, CCC-SLP; Ron Hathaway, DDS, MS, MS; Trish Severns, MA; and Isaac Wornom, MD.  A sincere round of applause to this “team” of professionals for sharing their expertise with Connections families!

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We also enjoyed a panel of individuals and families from a variety of backgrounds who shared their own personal journeys with cleft and craniofacial care.  We could go on all day about all the wonderful contributions of our program participants!

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Besides all the connections, support, and education that took place throughout the day, there was a whole lot of fun going on too!  Our children’s activity room was a busy and happy place, with everything from crafts and origami to movies and books.  Highlights of their play day included a kids’ yoga session and a visit from about 15 dogs of all sizes, who were completely content with the shower of love and excitement that came from our group (kids and adults alike!).

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All in all, Connections was a huge success.  Please visit our 2014 Photo Gallery for a peek at the good times we had.   If you attended Connections 2014, please leave us a comment here so others hear about your personal highlights from the day!   For those we missed this go-around, we hope you’ll spread the word about Connections and join us in the future!

Summer Surgery is on the Calendar

Even if school is still in session, we’re heading into Memorial Day Weekend, the official start of summer for many families.  Summer means a lot of different things to different people but if you’re the parent of a school-aged child with a cleft, your summer schedule may center around one big event: A summer surgery.

There are as many great ways to prepare for surgery as there are children and families making those plans! Building a surgery calendar is just one of many ideas but we hope it inspires you to prepare for your own experience as you and your school-age child head to the hospital–whether it’s this summer or next winter.

  • Curious George Goes to the Hospital is a long-time favorite picture book for school-aged kids. A visit to your local library will turn up other books to share with your child as he or she prepares for surgery.

    Curious George Goes to the Hospital is a long-time favorite picture book for school-aged kids. A visit to your local library will turn up other books to share with your child as he or she prepares for surgery.

    A family surgery calendar is a simple way to help your child engage and invest in his or her own experience with surgery and hospitalization. School-aged children even as young as six or seven years have begun to develop a concrete sense of time though shorts spans–a few days to a few weeks–are probably most easily understood for younger school-aged children. A calendar can be good visual aid for children as they help prepare for their surgery.

  • A few weeks prior to surgery, help your child mark the surgery date on a calendar. Stickers, markers, crayons, and tape are easy tools for kids to use as they build their calendar. Plan a few specific events leading up to the big day and add those to the calendar. Possibilities include:
    • Visiting the hospital and admissions desk
    • Choosing a special toy, blanket and or book to take along to the hospital
    • Making a packing list and/or packing for the hospital stay
    • Visiting the library to search for picture books about hospitals or surgery
  •  Make a few plans for after the surgery date and add those to the calendar. The surgery is a big deal, but it doesn’t have to take center stage. Help your child think about and look forward to life after surgery:
    • Having a friend visit your child when he or she has returned home
    • A family picnic or cookout
    • The doctor’s all-clear for your child to eat a favorite food
    • Any other activity that will help your child focus on returning to life-as-usual after surgery.

Post your family’s surgery calendar on the refrigerator or some other high-traffic area in your home (remember to keep it at kid-eye-level!).  Add to it, revise it, and highlight days as they come and go. Print a Family Surgery Calendar.

Your treatment team coordinator will have other great information about your particular hospital and what to expect before and after your child’s surgery. 

What tips and suggestion do you have to share about helping children and families prepare for surgery?

Congratulations, 2014 CPF College Scholarship Recipients!

We are pleased to announce our 2014 CPF college scholarship recipients. We received a competitive pool of over 100 extraordinary applicants, and the CPF Scholarship Committee had no small task in selecting this year’s recipients. We would like to thank all of the generous donors who continue to make this fund possible and who have helped us set a new record for 2014 as we award 18 $500 scholarships. Read more about this year’s recipients here.

The 2014 CPF college scholarship recipients are:

Whittney Chu – Warren, NJ

Elana Colangelo – West Hartford, CT

Anise Gagnon – Orlando, FL

Hailey Gardner – Blythewood, SC

*Nathan Garran – Eastham, MA
       *Gip Seaver Scholarship Recipient

Sarah Garvin – Cortland, OH

Kelsey Haggerty – Shoreham, NY

Lauren Hestand – Lompoc, CA

Logan Jones – Simi Valley, CA

Kristina Ladd – Ayer, MA

Claudia Lay – Carrollton, TX

Justin Marsee – Thompson Station, TN

Antonio Renaldo – Pasadena, MD

+Cantley Roberts – Malvern, PA
       + Randall/LaRossa Scholarship Recipient

Nicholas Rossi – New City, NY

Rachel Sciabica – San Antonio, TX

Chelsea Valenzuela – Delray Beach, FL

Haley Whitfield – Trophy Club, TX

Congratulations!

Part 7–One From the Team: Speech Therapy and the School-Aged Child

Special Challenges for School-Aged Children

Special challenges for school-aged children and their speech development are often associated with tonsils and adenoids. Some of these challenges include:

1) In their school-age years, some children may develop issues that are particularly challenging. One common issue involves a short palate which causes speech to become increasingly hypernasal or air escaping the nose when it hadn’t been a problem earlier.

2) The adenoids sit above and behind the soft palate (but we can’t see them by looking in the mouth). Adenoids can be relatively large in younger children but by 9 or 10 years of age (or older) adenoids may get smaller and take up less space. When this happens it may create a shortness of the palate that wasn’t affecting speech before.

3) In their school-age years some children develop large and infected tonsils and adenoids that may require surgical removal. Removing the tonsils and adenoids can have a very positive effect on the child’s general health. Even if the outcome of the adenoidectomy and tonsillectomy includes the need for secondary palatal surgery to correct the speech and resonance issues, it is usually a necessary step. Likewise, if a child has a short palate or a palate that doesn’t move well, they may need the secondary surgeries previously discussed. It may be necessary to remove large tonsil and adenoids before this surgery. The removal of the tonsils and/or adenoids may make the speech temporarily worse (more hypernasal with air escaping in the nose). This is a temporary issue that the scheduled palate surgery is meant to correct.

In general, the whole area of tonsils, adenoids and palate function can become very complicated and it is critical the child’s team is involved in the decision making for any of these surgeries so that outcomes can be anticipated and solutions planned from the start rather than after the fact.

Part 6–One From the Team: Speech Therapy and the School-Aged Child

 

Tips for families about timing of speech therapy

Early intervention is often beneficial with the right approach!  Knowing what sounds to target and how to target them is important to later speech success.  If your child’s palate is not yet repaired, some early intervention teams will provide home-based speech therapy to facilitate vocabulary and receptive language development. Prior to a palate repair your child’s speech sounds will be limited to primarily /m/, /n/ and vowels.  Many children like to produce and experience grunting and growling sounds at this stage as well.

Emphasis on other sounds too early (sounds that require a completed palate surgery) can produce compensatory sound errors due to the limits of the palate; targeting these other sounds can create cleft palate speech errors that have to be corrected later.  Fortunately, there are many therapeutic activities including sound play and verbal cues that can be helpful and introduced in very early speech therapy. Many children do not receive early intervention services until the palate is repaired. At that time specific sound play goals can facilitate speech in the context of play.

On our team we like to evaluate the development of sounds approximately 3 months after the palate repair to determine the time to initiate speech therapy. Speech therapy is recommended if the child is not developing what are considered “high pressure” sounds. These are sounds that require that the palate seal off the nose from any air loss during production of these sounds, a function not possible until the palate is repaired!  These include sounds like “b, p, t, d, k, g, sh, f”.  Sound development is also driven by age, so the lack of an ‘f’ for example would not alone indicate poor palate function in a 2 year old. However, if that 16 month old or 2 year old is only producing nasal sounds (m, n, ng) and vowels, this would indicate a need for early speech therapy.

Speech therapy will look like play time but helps the speech therapist and child accomplish their work in the most productive ways.

Speech therapy will look like play time but helps the speech therapist and child accomplish their work in the most productive ways.

Speech therapy for young children is presented in the context of play! Since play is the strategy of speech therapy for toddlers to preschool, it is important to make note that although it appears the child and speech therapist are simply playing together, specific goals and strategies should be obvious to you as the parent. If goals are not explained or do not lead to increased sound play or expressive language, be sure and discuss further with your child’s speech therapist or on the team the examples of progress you are looking for.

Speech therapy ultimately determines the need for what is considered secondary palatal management which is a surgery to improve the function of the palate for speech.  If a child’s palate is too short, too immobile (doesn’t move well) or the gap between the palate and the back wall of the throat is too large, additional surgery may be necessary. However, speech therapy is the first intervention, often, throughout the toddler-to-preschool years.  In the past, five-years-of-age was the most common age for a  second a second surgery to address the function of the palate.  Now, with improved technology to help assess the function of the palate, some teams and surgeons are recommending them as early as 3 ½ years though again, most commonly only after a period of direct speech therapy.

The child’s ability to fully participate in speech therapy is significant by age 3 and beyond.  Targeting, for example, the sound being produced too far back in the throat or all out the nose (sound errors both common with cleft palate) requires that the child’s cognitive development allows him or her to understand the changes being targeted.  Determining that a non-cooperative 2 year old leaks air out the nose because of the structure of the palate may be premature conclusion!  For success at school, most teams like to see that by 5 years, or prior to kindergarten, the child’s speech is understandable to his peers. If your child’s speech quality suggests a surgical procedure may be needed, it is important to have the full participation of the cleft treatment team to help with making this decision.

Finally, some children do require a break during the time they are preparing for bone graft or during orthodontic expansion. Some of our older patients (teenagers) may have some errors on sounds like /s, z, sh/ due to the position of their jaw or tooth eruption. If these sounds will change with a change in structure, it is often recommended they follow up after any additional procedures. A short-term period of speech therapy might be recommended at that time.

Miss earlier posts in this series?

Part 1Speech with the Team, Speech at School here.

Part 2–Building the Relationship Between Parents, Team and School here.

Part 3–Timing and Need for Speech Therapy here.

Part 4–Why Aren’t we Done Yet? here.

Part 5–Surgery and Speech Therapy here.

About this series: We recently asked Theresa M Snelling, M.A.,CCC-SLP, to help us learn more about speech development and support for the school-aged child. We are so pleased to share her response with you in this special eight-part, One From the Team series, Speech Therapy and the School-Aged Child.

Teresa is clinical coordinator for the Cleft Palate and Craniofacial Center at Rose Medical Center, Denver, CO and has been working with patients and families affected by clefts for more than 30 years. If you need assistance locating a team or a cleft-specializing speech therapist, please, drop us a line or give us a call! 1.800.242.5338 or info@cleftline.org.

Part 5–One From the Team: Speech Therapy and the School-Aged Child

Surgery and Speech Therapy

My child just had a jaw surgery to get ready for braces.  Will surgery and braces make more problems for his speech?

Palatal expanders. Many children report additional speech problems related to palatal expanders which are often worn before the bone graft surgery on the alveolar ridge (gum line).  During this time, children may struggle for as long as two weeks with poorer speech clarity and problems managing their saliva (spit).  After about two weeks most children have adapted to the appliances and things improve. This is not a good time for speech therapy as your child’s dental structures are moving and changing.  As the structures stabilize, speech therapy may or may not be needed. Certainly any new speech errors created by the expander (an example only, I’m not picking on palatal expanders or my orthodontic partners!) should disappear after the expander is removed or your child has adapted to its presence.

Some children require orthognathic surgery that moves upper and/or lower jaws forward (or back). Even though many of these larger surgeries are done during the teen or young adult years, there is a possibility with some of these procedures that a child’s palate becomes “short” in proximity to the back of their throat. If your child had a surgery to improve speech, such as a pharyngeal flap, when younger, the flap may create some pull on the movement the oral surgeon is trying to create. Releasing the flap may assist with the orthognathic surgery; however, this should be done in coordination with the team to minimize a negative impact on speech. There are many factors that feed into the outcome if this situation presents itself and too many factors to detail here, but this is an example of how critical the team consultation is to those outcomes.

speech mechanism

 Human speech is produced by the functioning of many complex structures in the mouth and throat.

Changes to the structure around the soft palate (back roof of mouth)–even without surgery or use of an appliance like an expander–can affect speech. This is another great opportunity to resource all the expertise available through your cleft palate team treatment team. Input from the speech pathologist, surgeons and dental professionals are needed to monitor, anticipate or minimize the effect the physical changes may have on speech and healthy speech development.  If your child’s speech changed/worsened as a result of another medical procedure, the team assessment will include a plan for improving speech. Although sometimes this can mean another surgery, the goal  is normal speech and resonance and so it should not be assumed, without further assessment or input from the whole team, that things cannot be improved upon.

Finally, by the time your child is involved in some of these orthodontic or oral surgery procedures, he or she is old enough to be actively involved in the discussion about treatment planning and follow up care. Engaging the child/patient in this way minimizes surprises for them and contributes to better outcomes–and that’s the ultimate common goal for parents, patients, and healthcare providers!

Miss earlier posts in this series?

Part 1Speech with the Team, Speech at School here.

Part 2–Building the Relationship Between Parents, Team and School here.

Part 3–Timing and Need for Speech Therapy here.

Part 4–Why Aren’t we Done Yet? here

About this series: We recently asked Theresa M Snelling, M.A.,CCC-SLP, to help us learn more about speech development and support for the school-aged child. We are so pleased to share her response with you in this special eight-part, One From the Team series, Speech Therapy and the School-Aged Child.

Teresa is clinical coordinator for the Cleft Palate and Craniofacial Center at Rose Medical Center, Denver, CO and has been working with patients and families affected by clefts for more than 30 years. If you need assistance locating a team or a cleft-specializing speech therapist, please, drop us a line or give us a call! 1.800.242.5338 or info@cleftline.org.