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Meet Sydney Barton.She is an amazing child and this is her SMILE story

A Parent’s Perspective on Medications During Pregnancy

My experience as a grandparent of Cleft Lip and Palate

Unsafe Drugs during Pregnancy

Your First IEP Meeting

Barry’s Smile Story

Bring-A-Smile Program

Connect with a Smile Leader In Your Area

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Volume 1 September, 2012

September is National

Craniofacial Acceptance

MonthJoin us on Facebook to learn how you can get involved with National Craniofacial Acceptance Month throughout September.

............... see Craniofacial Acceptance Month, page 7

Craniofacial Acceptance Month – Do you know the Importance?The month of September is designated especially for Craniofacial Acceptance Month! Although The Cleft Lip and Palate Foundation of Smiles is always trying to spread awareness and acceptance of craniofacial differences, we are excited that there is a special time set aside that we can really spread the word and broaden our efforts!

Craniofacial Acceptance Month is so important to us, as parents and families of children with craniofacial differences because we can see firsthand the importance of educating others. Every parent only wants the best for their child, for their child to be loved and accepted for who they are. When our children are born with a craniofacial difference, we can look past it immediately, but unfortunately, that’s not always the case with those who have never come across someone with a craniofacial difference.

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2 |© 2012 The Cleft Lip and Palate Foundation of Smiles

Meet Sydney Barton.

She is an amazing child and this is her SMILE story.When I found out I was pregnant with Sydney, it was a roller coaster of emotions. My husband and I had a son, who was four at the time, and we had just went through a rough second trimester miscarriage. I was scared, overwhelmed and just plain exhausted. Our hearts hadn’t healed from the miscarriage and we hadn’t had time to grieve properly for the loss of our son. My pregnancy with Sydney was a rough one, as they all were. I had low amniotic fluid, high risk of pre-term labor, Sydney was breach, and my blood pressure was rising and rising. All seemed to be going as smoothly as a high risk pregnancy could go, then BAM! We found out at our 36 week ultrasound.

Featured Smile Story

We had a different ultrasound tech this time. She was spending too much time scanning her face and I knew something was wrong. The tech would not look me in the eyes. She excused herself many times, going in and out of the room. The last time she came in the room she told me we had to go straight back up to my OB’s office. My husband was working, so I was alone at this ultrasound. We had been having two or three a week, so it was no big deal that he wasn’t at this one. I called him in a panic and told him he had to meet me at the office, there was something wrong. My OB entered the office and before she could even spit it out, I knew. So to be sure she wanted us to go have 4D scan. We drove 2 hours to Women’s and Children’s hospital for the 4D ultrasound and sure enough, my first born girl had a cleft lip and palate. My husband shut down even more and this news almost ended my marriage. Our hearts hadn’t healed from losing our son to a miscarriage and then this news at the end of a long and difficult pregnancy. We were in shock. We went straight from the 4D scan to a meeting with a Perinatologist and two hours later we were sitting in the Craniofacial Team’s Office. My world was spinning. I felt like my whole life changed in a matter of hours. I was consumed with guilt, anger, fear and blame. I blamed myself for many different reasons. I was afraid of what our families would think. I was

afraid that my husband would completely shut down and I would lose him too. I had such a range of emotions; it is hard to even explain them all.

We had ZERO history of clefts in either of our families, so we had no idea what questions to ask. I was in tears and my husband was in denial. We were probably the two worst people to deal with at that moment. We hadn’t even had time to digest the information, yet there we were. We were sitting in an office full of people who deal with clefts every day. We felt stupid, we felt ignorant, and I felt ashamed. At one point the Cleft Team Nurse asked us when we found out. I told her just a few hours before and she politely excused herself while I was crying uncontrollably in the office. We left the surgeon’s office. I cried all the way home (2 hour drive). My husband and I did not talk. I retreated to my standard defense mechanism-research. I poured myself over the internet and learned as much as I could in the coming weeks. My OB was very reassuring and eased my fears, but my husband was still angry and bitter.

Then, the moment came that would change our lives forever; On May 22nd, 2008 at 8:00 am, my Sydney was born via C-Section at 38.5 weeks. I delivered my first child naturally, but with the complications that I had during my pregnancy with

© 2012 The Cleft Lip and Palate Foundation of Smiles | 3

Sydney, my OB demanded a C-Section. That moment, the moment I heard her cry, the moment I saw her face and the moment I saw tears in my husband’s eyes, I knew it would be OK. I remember looking at him peeking over the curtain and seeing a smile on his face. I turned to him and asked “how does she look?” He replied, “Amazing”. I could tell by the look on his face and the tears in his eyes she was perfect. That moment I realized that my family could get through this. That moment I knew my daughter was going to need an advocate, a mother, and a strong support system. I knew at that moment, life was going to be glorious again.

My daughter was born with a unilateral cleft lip and palate. She was also born with a congenital heart defect known as ASD, which is a small hole in her heart. That moment I also realized her life was not over, it was just beginning. Breastfeeding was obviously a challenge, but we did it. It took several weeks of practice, and then several more weeks of practice after her lip repair, but we did it. We made it through the sippy cup transition, the palate repair, the year and half of PT, Speech Therapy and some OT. We made it through it all. We have made it through 4 sets of ear tubes, countless ear infections, weeks of nothing but doctor appointments and therapy, all while raising two other children and

working full time jobs. We did what strong families do, we came together and supported one another.

My daughter has taught me so many life lessons during her four years of

life. She has taught me optimism. She has taught me the meaning of loving someone unconditionally. She has taught me to be a better mother, wife and woman. She has taught me how to persevere. There is not a stronger child on the face of the earth than my little girl. She smiles constantly. She brightens the room when she walks in. She makes everyone around her better. She makes everyone smile. She understands the meaning of beauty. She loves with her entire soul. Her smile keeps me going every single day. Life with a cleft child can be challenging. It has also been

the most rewarding experience of my life. I enjoy watching my daughter face a new challenge and then master it. I enjoy watching my little princess grow into a little lady. I have watched my little girl overcome challenges that most adults could never overcome. After six surgeries and many more to come, she still smiles. She warms my heart every time I look at her. I now could not imagine my life without her cleft. I can only hope to teach my Sydney half the life lessons she has taught me in her 4 years on this earth. She is an amazing child and this is her SMILE story.

At that moment I realized my family could get through this. I knew my daughter was going to

need an advocate, a mother and a strong support system.

4 |© 2012 The Cleft Lip and Palate Foundation of Smiles

A Parent’s Perspective on Medications During PregnancyIn 2001 Alysse Kasowski was the victim of a drunk-driving accident which caused her to suffer from traumatic brain injury and seizure disorder.  In 2005, she started taking Topamax, prescribed by her doctor.

The 29-year-old Saratoga mother of an adorable 2 ½ year old son, LleytonEston Marshall, speaks fondly about the love of her life, the specialness of motherhood, and how he has struck a deep chord in her entire existence.

Upon learning that she was pregnant 2009, Alysse asked her neurologist asking if it was safe to continue taking Topamax. Her doctor advised that information available indicated that Topamax was as safe as taking Benadryl during pregnancy. And so, she continued to take Topamax to prevent seizures.

It wasn’t until March 2011 that the FDA released a MedAlert warning about the increased risk of birth defects associated with Topamax and changed Topamax from Pregnancy Category C to D.

When asked how having a child with a cleft impacted Alysse, she speaks quickly, her voice fills with emotion. “It’s heartbreaking to watch when your baby is unable to take part in the joys of feeding, when your baby needs a special orthopedic suction bottle. It’s hard to mentally prepare for the surgeries, to prepare Lleyton for the surgeries, to prepare him for the pain. He doesn’t understand why.”

“I don’t know how to explain the pain to him,” says Alysse. “And I don’t know how to explain how guilty I feel.”

While Alysse and her family have health insurance, the coverage only goes so far. Lleyton didn’t just have a lip issue; he had a hole in his face.  At some point, health insurance calls these procedures cosmetic, when, in fact, they are not.

While Lleyton doesn’t need these last two surgeries to survive; he has to survive in a society, an often cruel society.  He will also need additional services for dental, speech therapy, and a special learning plan.

When she was 20 weeks into her pregnancy, Alysse learned that her baby would have profound left lip and cleft palate. At first, she cried and felt worthless. Then she pulled herself together and started researching. Armed with a Masters Degree in Special Education and knowledge of health and wellness, she had the know-how to probe online resources.

First she found an excellent surgeon, an otolaryngologist, whowhen Lleyton was 7 weeks old closed the lip gap; at 7 months repaired the lip, and at 1 year old made a repair to the palate by grafting bone from a cadaver.

Next Alysse found a law firm.  While on Facebook, she noticed advertisements for law firms representing families of mothers who took Topamax while pregnant. Alysse contacted three law firms: One law firm never responded; one law firm tried to put

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As a mother of twins born with Cleft Lip and Palate, CEO and Founder of the Cleft Lip and Palate Foundation of Smiles, it

has been such a blessing to meet patients and families all over the world and build long lasting relationships with all our

wonderful families. There is never a day that goes by where I am not meeting new patients and families. It’s AMAZING. Our families are so supportive of everyone and always here for each other during all the challenges we face as a family. I look forward to our growth as a family. It’s a great feeling

knowing when I am concerned or upset, happy, or feeling any emotion; I can get online and write to our families and get the support I need. I am proud to be a part of such an AMAZING community. Thank you all for making our foundation a huge

success!- Rachel Mancuso CEO and Founder (A parent of twins born with

Craniofacial Differences) June 27, 2012

her in group chat mode; and one law firm wanted to drive from Philadelphia to Saratoga to meet her and Lleyton.  Because she was impressed by the law firm wanting to put a face on the problem and their person-to-person contact, Alysse retained the services of Anapol Schwartz who has since filed an unsafe drug Topamax lawsuit requesting financial compensation to cover the costs of Lleyton’s prohibitive medical bills and services and their pain and suffering.  Having a child with a cleft birth defect not only affects the child but puts a financial and emotional burden on the husband and wife.

Alysse Kasowski is a member of the Cleft Lip & Palate Foundation of Smiles craniofacial community.

This Foundation is a blessing for all who are members of it. I was born with a cleft lip back in 1970 and my parents had

no real means of support back then. I only wish that they had had something even remotely close to this Foundation back then for support and education for me and my family. This Foundation provides the education and the knowledge, but

most importantly it provides much-needed support. I can’t say enough good things about them. I have come to think of this

organization as not just friends, but as family. - JoAnn Biondi, March 23rd. 2012

When you are given, (or not) the diagnosis of cleft lip and palate, what are you supposed to do? So, many questions, etc. Thankfully the Cleft Lip and Palate Foundation of Smiles is there to help. There are so many families affected with some

sort of craniofacial issue. You can ask a strange question and you’ll get a response of someone having gone through

that issue or having the same issue as you. I can’t thank them enough for doing such a great job!

– Meredith F. (A parent of a child born with Craniofacial Differences), March 23rd, 2012

Invaluable support and information can be found here with this organization. Having a child with a birth defect can be

a stressful, sometimes isolating experience. The support staff makes members feel validated, supported and not so alone. I

wish I had had them when I first learned of my son’s condition while pregnant (don’t think they were around yet).

- Marcella R. (A parent of a child born with Craniofacial Differences) March 24th, 2012

We have found the information and services provided by Cleft Lip and Palate Foundation of Smiles has been highly useful. We appreciate their continued support that they provide to

families dealing with cleft lip and palate. - Mending Faces (A Non Profit Public Charity) March 25th, 2012

6 |© 2012 The Cleft Lip and Palate Foundation of Smiles

My experience as a grandparent of Cleft Lip and Palate.While my daughter was very early in her pregnancy is when we learned she would have twins born with bilateral and unilateral Cleft lip and Palate. I remember the helpless feeling of not knowing what to say because I barely knew what it was or what it meant for the babies. That is when the prayer, research, and education began. By the time the babies were born we had a good idea what to expect we thought. We were all scared and we hung on every word the doctors had to say. We were looking for answers, we found that even the hospital nurses had not had a lot of experience on how to feed or what bottles were the best, as they only had one option.

The education is never ending, as they grow they face new hurdles, oral sensitivity, eating issues, ear infections, speech issues and it changes after each surgery.

What is amazing is how resilient they are, how well they adapt after surgeries, they are just normal little boys. They are loving

and thriving and my little hero’s, and because of them and their challenge’s their mom has been able to reach literally millions of people who are going through this sharing their stories and we are all learning what all is associated with Cleft Lip and Palate and share resources as we are all in this together. —Linda Mancuso

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The negative reactions that children and their parents can get may range from a quick glance out of curiosity, to a blatant stare, to whispers, to being approached with questions, to ridicule. The key to stopping this from happening is education. When others learn about craniofacial differences, when they understand what they are and how to handle situations where they meet someone who has one, they are much for likely to handle the situation appropriately.

You may be thinking that other people’s reactions shouldn’t matter anyways, but this isn’t so much for the benefit of the person being educated as it is for the family dealing with a craniofacial difference. Having to face surgeries and all that comes with craniofacial differences is hard enough on its own, but to have to constantly try to protect your child or family member or yourself from ridicule or exclusion is a challenge that you shouldn’t have to face simply because of a physically different attribute. When we take the time to educate people who may otherwise have never heard of or seen a craniofacial difference, we are protecting those families, those children, from unnecessary, hurtful, and avoidable incidents.

Educating others and making them aware of craniofacial differences is so important to the Cleft Lip and Palate Foundation of Smiles! We hope that you will join us in celebrating Craniofacial Acceptance Month this September. To keep up with events happening in September with The Cleft Lip and Palate Foundation of Smiles visit our Facebook page.

Feeding a baby with a cleft is one special consideration. Our Weimer Bottle Fund helps provide special needs bottles to patients and families at no cost. Yearly, we deliver hundreds of bottles to patients and families. If you are in need of a special feeder or would like to support our Weimer Bottle Fund, Please contact Rachel@cleftsmile.org and visit our Weimer Bottle Fund listed on our Website http://www.cleftsmile.org/programs/weimer-bottle-fund/ to make a donation or download our weimer Bottle Fund application.

From page 1

CraniofacialAcceptance Month

Weimer Bottle Fund Program

Supporting the Weimer Bottle Fund:

8 |© 2012 The Cleft Lip and Palate Foundation of Smiles

Unsafe Drugs during PregnancyIs there a foolproof method for knowing which drugs are safe to take while pregnant?

The Food & Drug Administration assigns all approved drugs to Pregnancy Categories based on data obtained through animal studies and clinical studies or experience. Pregnancy Categories also help healthcare professionals and women weigh the benefits vs. risks of using certain drugs during pregnancy. Most (but not all) birth defects occur in the first three months or first trimester of pregnancy, when your baby’s organs are forming.

Here is an inclusive list of drugs that may have birth defect risks.

Most drugs fall into the Pregnancy Category C. Animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant using C drug in pregnant women despite potential risks.

Pregnancy Category C includes: NSAIDs like Bayer, Bufferin, Motrin, Advil, Anaprox, Bextra, Celebrex,

Antidepressants – most / not all -Celexa, Cym balta, Effexor, Lexapro, Prozac, Wellbutrin, Zoloft; Hydrocodone/opioid pain relievers – Oxycontin, Vicodin, Codeine; Theophylline which are used in therapy for respiratory diseases such as COPD and asthma; Compazine for severe nausea & anxiety; Sudafed; Diflucan (fluconazole); Cipro (antibiotic)

Pregnancy Category D drugs have human data demonstrating evidence of human fetal risk, but the potential benefits of these drugs may still be considered acceptable in certain situations.

Pregnancy Category D includes:Aspirin; Chemotherapy drugs; Lithium; Paxil antidepressant; Retin-A; Dilantin and Depakote to prevent seizures; Tetracycline; Topamax was formerly in Category C but the FDA released a MedAlert safety update in March 2011 to add a warning about birth defects and pregnancy, including specific warnings about Cleft Lip and Cleft Palate.

Pregnancy Category A, B, and X For Pregnancy Category A, there are adequate and well-controlled human studies which have failed to demonstrate a risk to the fetus in the first trimester of pregnancy and there is no evidence of risk in later trimesters.

Pregnancy Category A includes: Folic acid; Vitamin B6; and some thyroid medicines using prescribed doses.

In pregnancy Category B, animal reproduction studies have failed to demonstrate a risk to the fetus and there are no adequate and well-controlled studies in pregnant women.

Pregnancy Category B includes:Tylenol and other over-the-counter analgesics; Aspartame (artificial sweetener); Pepcid; Prednisone; Benadryl; Insulin for diabetes; Amoxicillin used to treat certain infections caused by bacteria, such as pneumonia, bronchitis, and infections of the ears, nose, throat, urinary tract, and skin; Claforanused only to treat or prevent infections caused by bacteria; Kaopectate, Immodium, Maalox Anti-Diarrheal; and Advil and Motrin - Pregnant women should not take ibuprofen during the third trimester.

And for Pregnancy Category X, studies in animals or humans have demonstrated fetal abnormalities and/or there is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience, and the risks involved in use of the drug in pregnant women clearly outweigh potential benefits.

X Accutane for acne; Clomid, a non-steroidal fertility treatment used to induce ovulation in women who have difficulty conceiving; Coumadin blood thinner; Crestor for reducing cholesterol; Evista; Yaz.

There is no foolproof way to know what is safe and what is not. It is unethical to perform clinical studies on pregnant women.

Read more on our website at http://www.cleftsmile.org/research-and-medications/.

© 2012 The Cleft Lip and Palate Foundation of Smiles | 9

Your First IEP MeetingAs your first Individualized Education Plan (“IEP”) meeting approaches, you may feel scared and anxious. This article seeks to reduce this anxiety by clarifying what you need to know and how to prepare.

The special education laws were written in large part to ensure parents are given a meaningful role in making decisions about their children’s special education. Congress included parents in the IEP process for two main reasons. First, parents are usually the greatest experts about their child’s abilities and needs, and can be expected to have information crucial to ensuring their children receive appropriate services. Second, school district personnel may make decisions based upon things such as cost, availability of staff, or administrative convenience (none of which are relevant to the IEP process). In contrast, parents act as a counter-balance to keep the focus where it belongs—on the student’s individualized learning needs.

School districts may try to lead parents to believe there are hard-and-fast rules about what can and cannot be provided to a student. This is largely not the case. With only a few exceptions, districts must meaningfully consider all requests parents make, and cannot simply disregard them because “we don’t do that here” or “we’ve never done that for anyone else.” If a district denies a parent’s request, it must demonstrate that its denial is appropriate based upon the student’s needs and nothing else.

Things to Know and Questions Parents Should Ask:• Write down your thoughts before the meeting, including

your child’s strengths and weaknesses, his/her most crucial needs and goals, effective rewards for your child, etc.

• What other class or school placement options are available for students who are the same age as your child? (Parents should be permitted to observe and receive information about all options, regardless whether the district believes other options would be appropriate for the student).

• How much experience do the teachers and related service providers have in working with your child’s particular type of disability?

• Does the District use any consultants or specialists in the child’s particular area of need?

• Has there been a goal written for all of my child’s needs? If not, why?

• How does the School collect and measure data to track my child’s progress on goals?

• What peer-reviewed research-based instruction will be used to teach my child?

• Describe the setting for my child’s classroom learning and services.

• What related services will be provided for my child, with what frequency, and what are the qualifications of the persons selected to provide such services?

• Ask questions about anything you don’t understand and any unfamiliar terms used.

• At the end of the meeting, read the services to be provided for your child and ask if the Team agrees, and if not, ask for a letter detailing what they disagree with.

• Rather than signing the IEP at the meeting, take it home to review it. (However, the district cannot begin providing special education services until you clarify in writing that you consent to their initial implementation. If you only agree with part of the IEP, write a letter to the school explaining what you agree/disagree with, so services can begin).

Ultimately, although IEP meetings can be emotional, stay calm and develop a collaborative relationship with the IEP Team to ensure less pushback when fighting for your child’s needs in the future.

Written By: Andy Linenburg, Esq. and his colleagues at Hinkle, Fingles, and Prior, P.C.

10 |© 2012 The Cleft Lip and Palate Foundation of Smiles

Barry’s Smile StoryBy: Nicole Hansen

I was your typical high school student, loved my art classes, hanging out with friends and of course adored my ‘sweet heart’. Our relationship progressed quickly and six months after dating I found myself pregnant. Seventeen, a senior in high school and pregnant. Emotions ran high at the beginning of my pregnancy. Scared about telling my parents, scared about physically having a baby and just overall scared about, at the that time, what was the biggest mistake of my life.

Word of course spread like wild fire through my small high school. I was into my second month of pregnancy, still keeping it from my parents, when a close teacher of mine confronted me. I felt mortified, but almost relived that the secret I was keeping was about to solidify. Having gone through three miscarriages herself, she knew how important prenatal care is and only wanted the best for my baby and me. She politely told me that she was giving me a week to tell my parents or she would. When my mom picked me up from school I knew that I had to tell her then. I wasn’t brave enough to bluntly say I was pregnant, so I told her I haven’t had my period in almost two months and thought something might be wrong. Her response was, “If you’re pregnant you will not have an abortion. I will raise that child myself if I have to”. That night my pregnancy was confirmed through a store bought pregnancy test.

My pregnancy was mostly normal considering the circumstances. I was allowed to eat when I wanted, sleep in the nurses office when needed and I had friends lifting my shirt up and talking to my belly between classes. All normal, right? My twenty week ultrasound quickly crept up on us. The entire time the baby wouldn’t turn so we only got a profile view of his face and it’s a BOY! High school graduation day arrived thirteen days prior to my due date. I walked down the isle with my honor cords, extremely pregnant and incredibly embarrassed. My due date came and went and finally I woke up with contractions a week after on June 28th, 2003. Labor started around 5:30 in the morning, we arrived at the hospital around eightish, I had an IV of Demerol and was progressing too fast for an epidural (thank goodness). At 10:15 a.m. I was fully dilated and ready to push. After an hour and a half of pushing the moment arrived and Barry was born. I was

relieved and happy that the delivery was over, but those feelings didn’t last long. The doctor was quiet, the nurse was quiet and they didn’t lay Barry on my chest like they did in those birthing videos. They didn’t let Brett cut the cord. I began panicking, thinking to myself, “Something is not right, something has to be wrong”. I asked the doctor, “Is everything O.K.?”. “No” he responded. “Your son has a cleft lip and palate”.

I didn’t know what a cleft lip was. I was afraid to look at him, fearing that I wouldn’t love him like I thought I would. Brett saw him first. I asked him, “What does he look like?” “He’s beautiful” Brett responded with tears streaming down his face and in that moment I knew things were going to be alright. The nurse handed Barry to me and Brett was right, he was beautiful, but I couldn’t help but feel sorrow. I was a teenage mother with a child who has a birth defect. I blamed myself. (I should mention that I never took anything or did anything that you aren’t suppose to while pregnant. I avoided medications, I never drank caffeine and I wouldn’t allow my friends smoke around me. The only thing I can think of that caused Barry’s cleft is the lack of prenatal vitamins in my early pregnancy along with the emotional stress I endured during those first months) I found it hard to call friends and tell them Barry was born. My sadness quickly turned into gratefulness. I knew that in the broad spectrum of things, a cleft lip and palate really aren’t a huge deal. By the time we left the hospital I had a good grasp of my emotions and was ready to take on the next challenge.

I don’t remember how we exactly found out about our son’s cleft team at the UW hospital in Madison Wisconsin, but I do remember what a hassel it was to actually see them. At

© 2012 The Cleft Lip and Palate Foundation of Smiles | 11

the time, Barry was on government insurance and we had to obtain preaurthorization for him to see the cleft team since our HMO didn’t cover the UW clinics. We made an appointment with the team when Barry was just a few weeks old and Brett’s mother and I drove an hour and a half to see them. Once we checked in with registration we found out that our HMO denied our request and so we had to turn around and drive home. A couple of days later I received a letter from our insurance stating that they denied our request because they already had a general plastic surgeon at their clinic. I was in no way going to settle for less! This is my child’s face and they want him to see their general plastic surgeon when there is a team of specialized doctors 80 miles away! Brett and I decided that since we both wanted to further our education, him being a journyman plumber and I wanting to be a dental hygienist, we would just move to Madison so we could go to college and Barry could see the team of doctors. So, Barry was just about two months old we packed up and moved to Madison to start our new “grown up” life.

Shortly after moving to Madison, Barry had his first surgery (September 10, ’03). I think the first few surgeries are a lot harder on mom and dad. You don’t know what to expect and everything is new and scary. We arrived at the hospital just as the sun was rising. Barry was hungry and not happy. Brett and I felt bad for all the other patients who were also about to go into surgery, because Barry would not stop crying from his hunger pains. These moments felt like tortorous hours. Soon, it was time. Time for Barry’s smile to change forever. I was excited for my baby to look “normal” and for strangers to stop staring at his beautiful clefted lip. We kissed our baby Barry good bye and prayed that everything would go well. After a couple hours Barry came out of surgery with tape over his lip, ‘no-nos’

on his arms, and fresh T-tubes in his ears. Dr. Mount declared everything went well. Brett and I were both a little sad to see his cleft gone, not something either of us thought we would feel.

Fall came, winter passed and soon it was time for the “big” one. It was time to repair Barry’s palate. We went through the all the motions and on May 26, 2004, just a month shy of his first birthday, Barry had his second surgery. This time Brett walked back to the OR and held his hand while being put to sleep. It is not an easy task for a parent to do, and it is one thing that does not get any easier with each surgery. Once again everything went well and Barry had a new palate and a tiny little uvula.

In August of ’04 it was recommended for Barry to be screened by the ‘Birth to Three’ program to see if he had any developmental needs. Which, of course, he did in the areas of expressive language and feeding. This is where our journey with speech therapy began. For the next two years we had a speech/laungage pathologist come to our house once a week for an hour to work with Barry. We loved Donna, and it was sad to see her go when Barry turned three and could no longer participate in the program. However, when one door closes another one always opens. In March, 2006 Barry was evaluated by the Madison Metropolitan School Distract to see if he would met the criteria for speech services through what would be his “home school”. It was noted that his speech intelligibility was significantly reduced by his hypernasal speech and increased rate and therefore did meet the criteria. In the fall of 2006 Barry started receiving speech services from Mrs. Knaack in, what is now his home school. We went twice a week for 30 minutes during the school year.

This brings us to 2008, the summer before Barry started Kindergarten. It was determined by his team that he

would benefit from having another surgery. This time it would be to repair his nose, which laid limp and revise his lip. We thought the palate surgery was “big”, but this was even “bigger”. Dr. Mount explained that she would take the existing cartilage from Barry’s nose and shift it around to make a larger nostrile opening (excuse my lack of technical terms) along with removing some of the scar tissue from Barry’s lip. For this surgery I went back to the OR, and I’m not sure if I will be doing that again. The surgery was suppose to take two hours. After two and a half hours we got a phone call from Dr. Mount. Our hearts started racing and we assumed the worst. It turns out that Dr. Mount completed his rhinoplasty, but was just not satisfied. He did not have enough cartilage in his nose to keep his nostrile from falling down and wanted our authorization to take some cartilage from behind his ear. We, of course, insisted and so she started over and they were in surgery for two more hours. The outcome of this surgery was phonemonal and we were, and still are, very pleased with the results.

Barry started kindergarten with a “butterfly” sewn to the outside of his nose, but he didn’t mind much. He continued with speech therapy and was your typical five year old boy, obsessed with dinosaurs and all things blue.

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In Decemeber, 2009 Barry started to regress in speech therapy, although he was trying his best to keep the air out of his nose when talking. Mrs. Knaack expressed her concerns to me and we made a special appointment to see his cleft team. It was determined that with Barry’s growth, the overall anatomy changed as well. He no longer had the physical ability to close off the back of his throat when talking, making it impossible for him to progress in speech therapy without another surgery. This whole process, was a two part operation. The first surgery was to remove his adnoids and the second part was to reconstruct the back of his throat. The latter being named a sphinchter pharyngeoplasty. He had these surgeries in April of 2010 and May of 2010, and this series of surgeries was extremely successful with Barry’s hypernasal speech.

September 2010, marks Barry’s most recent surgery. A couple years prior, Barry’s ENT doctor noticed that he ear

drums started pulling away from the tubes, creating holes, or perforations. She removed his tubes during our office visit and we waited to see if these holes would eventually close. The perforation in his left ear did close shortly after, however the one in his right (his cleft side) remained and over time continued to grow larger. This large perforation was causing Barry some mild hearing loss, as well as some discomfort while swimming. At the time of the surgery, the perforation had grown so big that his entire eardrum was almost completely gone (there was approximately 10% left). I was informed that with a hole this large, mutiple surgeries may be necessary to close it, and they could not be combined with other surgeries.

Present day, summer of 2011, Barry has just completed second grade! He had such a great school year and we were blessed to have such amazing teachers working with him. He graduated from speech therapy in May ’11! What an exciting, but sad day that was. Barry

is reading at a level 30+ and is on the forth Harry Potter book. He is so smart, compassionate, open minded and strong willed…the list of adjuctives could go on. As far as the future, he will need more surgeries. He is scheduled to have his tonsils out this August. He will need to have another ear surgery to close the tiny hole that remains. And then onto the orthodontist for a palatal expander and the dreaded bone graft surgery.

I want to leave you by saying, NEVER let your child be defined by their cleft. Everything that we experince in life molds us into who we are today. We let Barry have his moments of feeling sorry for himself. But we only allow moments, nothing more. There are so many negative things that can happen in life and these just aren’t ones that we will allow to consume us. Kids are strong, brave and smart. Don’t let your fears and worries be subjected onto them. Let them experience life open minded and mold them into who they were meant to be.

© 2012 The Cleft Lip and Palate Foundation of Smiles | 13

Bring-A-Smile ProgramIt’s all about One Card… One thought… to equal One Smile!

The Bring-A-Smile program is one way our families come together and support patients who are going through surgery for either lip or palate repair or and craniofacial surgery. It is for the dedicated mothers, fathers, parents, friends, and supporters of the network to show and voice our concern for a speedy recovery from a repair surgery! Just imagine the look on the child’s face when they receive all of our cards addressed to them!

Child: AnnaLee Easterling-ChavezDate of Surgery: 5-2-2012Procedures followed: AnnaLee is going to have her first surgery for her cleft lip on this date. She will then be 3 days away from 6 months old.

Child: Jackie HandDate of Surgery: 5-2-2012Procedures followed: Lip repair

Child: Camden MichaelDate of Surgery: 5-8-2012Procedures followed: Unilateral Cleft Lip Repair Left Side

Child: Carly WilliamsonDate of Surgery: 5-8-2012Procedures followed: Soft palate lengthening (& possibly some dental work while she’s “under”)

Child: Korbin JournaganDate of Surgery: 5-9-2012Procedures followed: my son is 11 months old and just now having his first lip repair surgery

Child: Ili Rose ModestoDate of Surgery: 5-21-2012Procedures followed: Reconstruction of her nose. Filling her upper lip and ear tubes.

Child: Alfred WeimerChild: Michael WeimerDate of Surgery: 5-21-2012Procedures followed: ear reconstructive & t tubes

Child: Trinity SmithDate of Surgery: 5-21-2012Procedures followed: Mandibular Distraction (Device Removal)—Pierre Robin Sequence

Child: Etienne KraftDate of Surgery: 5-23-2012Procedures followed: Cleft Palette Repair

Child: Abby MolseeDate of Surgery: 5-29-2012Procedures followed: Lip revision

Child: Izaiah OlsenDate of Surgery: 6-4-2012Procedures followed: Hard palate repair

Child: Clayton GoodmanDate of Surgery: 6-6-2012Procedures followed: unilateral Cleft lip repair

Child: Kai (KJ) HarrisDate of Surgery: 6-7-2012Procedures followed: Unilateral cleft lip repair.

Child: Bryant LopezDate of Surgery: 6-11-2012Procedures followed: Lip Repair

Child: Joseph Smith-NunezDate of Surgery: 6-11-2012Procedures followed: Lip repair

Child: Ethan MelocheDate of Surgery: 6-13-2012Procedures followed: They are doing his first cleft surgery to close his lip.

Child: Savana MclaughlinDate of Surgery: 6-13-2012Procedures followed: well the one we just had done a g-tube and a wrap and then next it is the cleft plate and then her jaw she is one 6 weeks old

Child: Kailani SardenDate of Surgery: 6-14-2011Procedures followed: Le Fort I premaxillary osteotomy and bone grafting

Child: Jacob SingsonDate of Surgery: 6-14-2012Procedures followed: Lip, Nose & Gum

Child: Brayden HansenDate of Surgery: 7-18-2012Procedures followed: Brayden is getting his Cleft Palate repaired/closed and tubes put into both ears.

Child: Brock CogginsDate of Surgery: 6-20-2012Procedures followed: Palate repair - first stage.

Child: Danielle FrazierDate of Surgery: 6-22-2012Procedures followed: Balancing her nose, and bringing her mouth up a little bit.

Child: Abigail BarbatoeDate of Surgery: 6-25-2012Procedures followed: Cleft palate repair and possible tube replacement.

Child: Kaylee SneltzerDate of Surgery: 6-26-2012Procedures followed: its her first big surgery! she getting Ear tubes, and a Lip adhesion-and snipping of abnormal tissue bands

Child: Avian GainesDate of Surgery: 6-22-2012Procedures followed: Bilateral cleft lip repair

Please take moment and review all patients that have had surgery and are recovering from surgery. If you would like to send get well cards to show your support or to learn how to enroll your child in our Bring-A-Smile Program, please visit our website www.cleftsmile.org and click on our programs.

© 2012 The Cleft Lip and Palate Foundation of Smiles | 13

14 |© 2012 The Cleft Lip and Palate Foundation of Smiles

Attention all Volunteers and Supporters:Craniofacial Acceptance Month is here. Celebrate with us in the month of September. We would love to have your help, become a Smile Leader Volunteer!

Our Smile Leaders reach out to Craniofacial Teams, School’s and OBYGN’s and other facilities in their area and share our material on Craniofacial Differences. Smile Leader’s are also the main contact for the location, they help us build a stronger connection base in their area so our patients and families has resources at their finger Tips. We have grown over the last few years to reaching Millions and Millions of families in the U.S. and even internationally. We need your help to make sure our families are getting the BEST support and ANSWERS to their questions. If you would like to become a part of the Smile Leader program, please contact Rachel Mancuso Founder & CEO of the Cleft Lip and Palate Foundation of Smiles, a Non Profit 501©3 Public Charity.

Connect with a Smile Leader In Your Area.Our Smile Leaders help provide connections and support for families with craniofacial differences in their state/country. Connect with a smile leader in your area listed below or contact us to learn how you can become a Smile Leader and make a difference for families in your area while building relationships that will last a lifetime.

14 |© 2012 The Cleft Lip and Palate Foundation of Smiles

Wendy Groce - Alabama, wengroce@gmail.comAnna Finlay - California, annafinlay1@gmail.comNicole Jackson - California, ennjaay@hotmail.comChristine LaGuardia - Colorado, laguardi@cuofco.orgShiloh Taclan - Hawaii, hegel.shiloh@gmail.comJodi Mastas - Idaho, jodimastas@msn.comPaula Mintchell - Illinois, psmeiring@yahoo.comJoy Bachar - Indiana, JBachar@comhs.orgAngela Hollin - Indiana, ahollin1@yahoo.comShelley Rinella - Kentucky, rinella7@comcast.netLisa Pollack - Michigan, lisa.a.pollock@gmail.comRachel Mancuso - Michigan, Rachel@cleftsmile.orgErica Watson - Michigan, watsonerica41@yahoo.comKelly Waston - Missouri, Kelleyreyes@me.comElizabeth Haney - North Carolina, ehaney30@gmail.comJennifer Holden Nichols - North Carolina, mookie59@bellsouth.netJoanna Karnis - North Carolina, jokarnis@msn.comJennette Wesseldyke - New Jersey, jawesseldyke@hotmail.comJeannie Dunkel - New York, jeanniedunkel@gmail.comMichael Levick - Ohio, msl1107@gmail.comKim Levick - Ohio, kim.levick@gmail.comAmy Skeels - Ohio, Jasper32us@aol.comAunna Barbatoe - Oklahoma, aunnamarie@hotmail.comJennifer Julian - Oklahoma, jsjulian25@gmail.com

Suzanne Nichols - Oklahoma, ksnichols@pldi.netMegan Merchant - Pennsylvania, meganmerchant@ymail.comSharon Snetlzer - Pennsylvania, sneltzer@zoominternet.netHeather O’Sullivan - South Carolina, heather@archdc.comMilinda Catalano - Texas, Milinda@cleftsmile.orgRoxanne Palomarez - Texas, Roxannepalo@yahoo.comLacey Buchanan - Tennessee, laceybuchanan@gmail.comLana Pruitt - Tennessee, lpruitt70@aol.comKimberly Albright - Wyoming, kimalbright@hotmail.com

Across

1 The action of consent to receive or undertake something offered

3 The systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions

4 The relationship between friends5 A group of people connected by blood or marriage8 Connecting or linking, as in people12 to give intellectual instruction 13 A facial expression showing happines or amusement14 The expression of approval or support15 The way in which two or more concepts, objects, or

people are connected, or the state of being connected

Down

2 The cranium or facial features being dissimilar or unlike others

6 Having Knowledge of7 To bear the weight of another9 Materials, money, staff, information, equipment,

knowledge, or any of wide range of things that might be necessary for an effective operation

10 The ground which other parts are laid11 Craniofacial Acceptance Month

Crossword puzzle using words that pertain to Cranionfacial Acceptance Month

Craniofacial Acceptance Month CrosswordLacey Buchanan

Would you like to have your ad in our magazine?Contact rachel@cleftsmile.org and have your ad seen millions of families all over the world.

GET SUPPORT, MEET FAMILIES, BUILD RELATIONSHIPS HIP—ASK QUESTIONS, GET ANSWERS!

We are here for you every step of the way! Join us as we support patients and families born with craniofacial differences. Together we can make a difference. Register online to join our community at cleftsmile.org and join our patients and families. Share your thoughts and concerns. Meet families in your area; build relationships with families all over the world who face similar challenges.

About Our Foundation

The Cleft Lip and Palate Foundation of Smiles was formed by Rachel

Mancuso, a mother of twins both born with cleft lip and palate. We provide positive support to patients and families of children with craniofacial differences by offering news, information on cleft palate teams, state-by-state resources, birth registry listings, and an online community where you can meet other families and share useful information.

Since 2009, we have built a dedicated board of directors who generously donate their time to develop relationships, maintain the new website, advocate on our issues, and gather the latest research.Cleft Lip & Palate Foundation of Smiles is a qualifying non-profit organization, EIN# 45-2230155.

Our vision is to provide support for individuals and families with cleft lip and/or palate, and other craniofacial anomalies.

THE BRING-A-SMILE PROGRAM: Our families come together and show we care by sending get-well cards to patients who are going through surgery for either lip or palate repair or and craniofacial surgery—whether it is the first or tenth surgery.

SMILE LEADERS: We help bring together families by locating and connecting you to members in your area. Learn how you can become a Smile Leader and make a difference for families in your area while building relationships that will last a lifetime.

IDEA & IEP RESOURCES: This social support group is for parents of children with all disabilities to share tips on obtaining appropriate public education.

WEIMER BOTTLE FUND: Feeding a baby with a cleft is one special consideration. Our Weimer Bottle Fund helps provide special feeding bottles to patients and families at no cost. Yearly, we deliver hundreds of special feeding bottles.

Supporting patients and families in needMake an impact on the lives of the nearly 7,000 babies born each year with cleft lip or cleft palate.

To make tax deductible donation online or through mail, please make all checks payable to:

Cleft Lip and Palate Foundation of Smiles Inc. All checks are to be mailed to: 1270 Blanchard SW Wyoming MI 49509

Contact Us to Learn MoreOur mission is to educate and bring awareness to others around the world whose lives are touched by cleft lip and/or palate and other craniofacial anomalies by providing support, education, advocacy, and research. To learn more about our foundation—or if you have questions related to cleft lip, cleft palate or any craniofacial differences—visit www.cleftsmile.org.

1270 Blanchard SW Wyoming MI 49509

SOME OF OUR MEMBER-SUPPORTED PROGRAMS INCLUDE: