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AmeriFace

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Centers to Support the Independence of Specific Populations, Health, Health Support, Human Services

Mission: We support individuals whose facial differences are present at birth, such as cleft lip and palate, Apert, Crouzon, Treacher Collins and Moebius syndromes, vascular malformations, as well as other conditions. We also serve those who have acquired facial differences as a result of illness, disease or trauma, such as stroke, cancer, accident and fire.

Geographic areas served: United States and Internationally

Programs: cleftAdvocate Family-to-Family Connection Pathfinder Outreach Network (serving all conditions) Goldenhar Syndrome Support Network Crouzon Support Network Treacher Collins Syndrome Support Network North American Craniofacial Family Conference

Community Stories

54 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

Hola mi nombre es William, soy de Ecuador pero desde hace 3 años migre a EEUU vivo en Houston soy labio leporino he tenido 4 operaciones en el labio me gustaría hacerme una última operacion tengo 38 años pero no tengo recursos para pagarmelos me gustaría me ayuden mi cel. 786-318-9024 operacion sonrisa me dio su información para poderme comunicar con ustedes sijeron que ustedes me pueden ayudar

Kerri F.

Client Served

Rating: 5

This is my daughter, Ella, who is now 12. When she was born I had NO idea what kind of journey we were on. My feelings went anywhere from guilt to this is the most beautiful face on Earth. Where do we start? Who do we see? How do I feed her? We found cleftadvocate 12 years ago. And here I thought we were alone! Nope! So much love and support 24/7 from people and families. We just needed to know that it would be ok. From surgeries, self esteem, therapies, pictures, insurance information, how to turn a palate expander key (that's where we are right now!) , what in the WORLD can I put in the blender while my child is on her third liquid/soft diet for 8-12 weeks and a place where I can go where people just understand. It's not a 1 and done surgery, as much as we all would love that. They become your support, your family for a long LONG time. I honestly don't know what I would have done without this organization. Organization doesn't seem like the right word. They are friends and family. Though most of us have never met, we all know the faces, stories and struggles. Here I was scared to feed my baby girl because I had no idea what I was doing. Now? Just an average GORGEOUS preteen who I can't keep off electronics and hear all about crushes on boys. I'm thankful for cleftadvocate and Ameriface every....single..day!! Guess what? We are not alone and it's going to be ok!

Previous Stories

General Member of the Public

Rating: 5

My name is Kerri and I am the mother to an amazing daughter named Ella. Ella is now 8 and healing from a bone graft surgery which is her third surgery this year alone. She was born with a unilateral cleft lip and palate. She was our surprise in the delivery room because it was undected through an ultrasound. So many questions, concerns and feelings. I had no idea where to turn or who to talk to. I stumbled across cleftadvocate/Ameriface thankfully! My emotions were everywhere and I had no idea where to begin, what to expect and needed to know there were others out there like her. I needed information and parents. I needed someone to tell me that it was going to be alright. That my daughter was alright. I needed before and after pictures. I needed someone to explain to me what was going on and what was going to happen in non-medical terms. Someone that has been there and done that. Ameriface has been that place. Whether it's to share experiences, pictures, give advice for pre op and post op, stories, help with a team, insurance, a shoulder to cry on, or just to brag about how awesome our kids are..They have been there with open arms. Our children go through surgery after surgery. Procedure after procedure. Therapy appointment after therapy appointment. We know how another parent is feeling without even speaking a word. It's been such an amazing experience and I am so thankful to be a part of it all!

General Member of the Public

Rating: 5

Hello my son Amir was born with bilateral Cleft lip and palate. When we first found out, I was 8 months pregnant. I was confused asking why?... When we got introduced to this wonderful organization we felt welcome at ease made us understand what was going on with our son. Group of Dr's and nurses are phenomenal!!!! Outstanding medical staff make u feel at home. Keep on doing what u all are doing excellent work. Thank you Broomi Family

Client Served

Rating: 5

They truly are a wonderful group of people. They are not only there with information when you need it, but they are there to encourage you and help you in any and all ways possible. Without Debbie and all she has done for our family, we wouldn't be where we our today. We are greatful for everything AmeriFace has helped us with. Truly great people and organization.

1

General Member of the Public

Rating: 5

I was born with a unilateral cleft lip and palate. I remember going to these sad picnics for parents and children with "facial differences" I say sad because no one was happy and all the parents would introduce their kids as this is my son or daughter with the cleft I don't remember anyone caring about what my name was just what kind of cleft I had, what surgery was I on did I have "the palate" also.

11 years ago I had boy/ girl twins, one had a bilateral cleft lip and palate. I knew since my pregnancy (16 weeks) but I think I'm a procrastinator or I'm one of those who thinks I don't have to deal with things till they come. So I didn't do much research or look for much support actually didn't even know that there was support out there and I sure didn't want to contact those "sad" groups.

My twins were able 1 month old and I was sitting in front of the tv while pumping milk watching the montel Williams show. It struk my interest when I heard something about cleft lip and palate so I stayed tuned. That's where, for the first time I heard about the wonderful Debbie Oliver and her amazing cause and she was in VEGAS!!! I immediately got on line and found cleft Advocate. We attended our first conference about 3 years later which was so wonderful to meet some of the people I been been getting know, helping and getting help from. I had actually met a young couple in person who just had their new baby girl and wanted to meet us in person who I had met in cleft Advocate.

This network has been so amazing all these years for me to be able to get help and get answers to things I never knew about it had gone through.

This week my family was blessed and able to attend this year's 25th annual conference! My twins are now 11, they have a younger brother who's 8 and a new baby sister. Being able to come this year has been amazing and so different to be in such a different place in our lives. What brought me the most joy was to see my son happy again and have that big smile on his face. He knew that he was just like other kids, he wasn't alone in this world and he wasn't my "cleft kid" he was himself and he is beautiful and perfect!

The conference is a huge plus to be able to make once in your lifetime is a huge plus but the heart and soul purpose of this network is the friendships, the support, the love and sense of family and others who "get it" then being able to help others to be out in the community and to be able to share what we got is priceless.

I'm so grateful that I saw that montel Williams show and learned about Debbie and her organization all those years back! What a blessing it has been.

1 Annie49

Client Served

Rating: 5

I expected going to this conference to get information on having a cleft lip and palate. What I came out with was knowing what to expect in the long run what our son will be going through. It was very eye opening for my husband and I. We also met new friends young and older. I love how the speakers used words that were easy to understand and we're able to answer our questions. I was expecting more people to attend. I'm glad it was a smaller amoubt if people after all. We were all able to connect with one another on a more personal level. My kids all met great friends. This was the first time being outside of a medical facility that we were able to interact with othet cleft lip/ palate kidd and adults. We cant wait to go back and attend next year.

abcfrye

General Member of the Public

Rating: 5

Amazing group of people who provided support, guidance, and insight that was much appreciated.

Previous Stories

General Member of the Public

Rating: 5

The information found on the ameriFace/CleftAdvocate website, Facebook page, via its members, and by Debbie Oliver was paramount in helping us get insurance coverage for our daughter's most recent surgery. Not only were we welcomed with open arms, but we were overwhelmed by the vast amount of knowledge, support, and genuine care and concern offered. Thanks for such an amazing resource for families with children with facial differences. We couldn't have done it without you.

Ally S.

General Member of the Public

Rating: 5

I cannot even remember how I came to know about AmeriFace, but from the moment I did- I loved it. Debbie Oliver is one of the most gracious, kind-hearted, intelligent women I've gotten the opportunity to know. AmeriFace provides so much information and clarity when it comes to the knowledge of Cleft Lip/Palate's and other Craniofacial deformities. The level of professionalism and care goes hand and hand. It truly is like a community, and they will make sure you are informed and comfortable. There is a plethora of information and resources you can find, just by visiting the AmeriFace website. It is an awesome organization, and I just wish more people were informed about it!

1 Robin53

Volunteer

Rating: 5

My family has always found comfort from the many people at Amerface. We have also been a part of helping others throughout the years and now my son is picking up and helping others.

Previous Stories

Volunteer

Rating: 5

Ameriface has been with my family since my son was a year old. They have been with us for good and the bad. I have also been able to help others due to this organization. I have become friends with many of the families and we have been able to watch our kids grow and become happy healthy teens.

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Volunteer

Rating: 3

Looking for an organization or community event that my daughter and her friends can help in with other children their age who have disabilities. IF anyone knows of any please let me know. Thanks. [email protected]

2 Cathy22

Client Served

Rating: 5

I've been a client, parent advocate and volunteer for 12.5 years, since the beginning when Cleft Advocate first formed. Debbie had just begun forming the organization, and I've been served as a parent of a child with a craniofacial difference and I've been a volunteer.

I would do it again in a heartbeat if I had to. This organization has done so much over the years. Hope it keeps on ticking for the next 12 yrs and more more to come.

Previous Stories

Volunteer

Rating: 5

Have been part of this group since 2002 when our son was born. Wouldn't trade it for the world. AmeriFace and it's programs are an absolute great resource for families and individuals with craniofacial differences. Always glad to participate when I'm able.

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1 Milli D.

Volunteer

Rating: 5

I ended up volunteering with AmeriFace because I fell in love with the people. I can't imagine going though my son's childhood without their support. cleftAdvocate was brand spanking new when I first stumbled on them, and they were a lifeline, a source of comfort, and a place of sanity. I honestly don't know what I would have done without them and am so glad I found them when my son was only a few months old. 12 years later, I love them just as much and I can't imagine my life without them.

kikaibear

Client Served

Rating: 5

I have been a member of this wonderful network of the most loving, caring, giving people for almost 10 years. I have to say that I couldn't have gone through some of the stuff I am reliving with my son without their loving support. When I first chatted with the founder on the phone it was amazing so touching to have an understanding person there to listen to me. I cannot say enough wonderful things about cA I love this community so much.

Previous Stories

Client Served

Rating: 5

I have been with this organization for about 8 years. It's got me eally tough times, celebrated good times and supported me through the whole roller coster. I will forever be greatful to have been given the privilage to meet so many of the families in person and to have gained lifelong friends. I constantly refer many to this network of friends for support, love questions. hope to meet some of you reading this real soon!

A. Kakiuchi (unilateral cleft lip) a proud mom to 8 yr old twins and a 5 yr old singleton (son born with a bilateral cleft lip and palate)

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General Member of the Public

Rating: 5

The cleftAdvocate Facebook page is an amazing resource for parents/families in the cleft community. I have never seen such a supportive group of people who are all so eager to give advise, share testimonies, and celebrate progress as this group is. As a young adult with a cleft, I'm aware that one day I might have a child with a cleft myself, and it is very encouraging to see these resources out there!

Missy14

General Member of the Public

Rating: 5

The sense of community that they bring to the families affected by Cleft, is invaluable. There can't be enough education for the public and families outside of just the medical perspective.

Client Served

Rating: 5

When our son was born with a cleft lip and cleft palate we didn't know what that meant, so beyond the shock of this when he was born, we started our research almost 9 years ago when the internet was just blooming. No wi-fi, all dial in, and we found AmeriFace and Cleft Advocate. They mailed us literature, and at that time a VCR tape, insert smiley, and talked with me on the phone to educate me on what a cleft was and what we needed to do.
Here we are 9 years later with a healthy active baseball player, four surgeries post, and very blessed to have organizations like this. I have referred many families to them, and support them financially when we can.

Ann_88

Volunteer

Rating: 5

I found CleftAdvocate shortly after my daughter was born 11 years ago with a cleft palate. I didn't know what to do or where to turn to for help. They were truly a beacon of light shining through the darkness of my despair when we just couldn't figure out how to feed our baby. The information and support I received from CleftAdvocate were life changing for me, my daughter and our whole family. I can't thank them enough and only hope that my story can help someone else as much as CleftAdvocate helped me.

Client Served

Rating: 5

When your family recieves a cleft diagnosis, it can be overwhelming-at least it was for us. Finding reliable information is a godsend as we soon learn that cleft, though challenging, is navigatable. We watched the cleft feeding video over and over before our little one was born so we would have the confidence to feed her. Aside from needed support in the early stages this organization helps you as your child grows. Often kids need dental, speech, hearing and psychosocial support, not to mention help with health insurance. Ameriface helped me know what questions to ask doctors. Through the group, I have met adults with cleft. It is an awesome organization that makes a difference.

Roni J.

Client Served

Rating: 5

8 1/2 years ago I was blesses with a handsome little guy. He was born with a bilateral complete cleft lip and palate. I had no clue what to expect. I was offered great support and advice that I now share. Then in 2011 my oldest was diagnosed with Chiari 1 Malformation. Again, huge support :) very blessed to have had the great help I have received. Thank you!!

Leah29

Client Served

Rating: 5

I am an adult with Goldenhar Syndrome. There were no groups to share information, understanding or compassion and empathy. We - my family and I were so very alone. because of the AMAZING work of this organization no one with a facial difference ever needs to feel alone again. For me, this is everything! I also have an amazing son who has a cleft lip and palate - this groups has excellent and well vetted informations!

Volunteer

Rating: 5

When we found out about our son's cleft during ultrasound this was the first place we were able to get information. I really appreciate everything this foundation has done and is continuing to do today.

Lesley10

General Member of the Public

Rating: 5

What An Amazing Organization That Not Only Help Parents Of Children With Clefts..They Help Children Themselves In Reassurance That We Are Not The Only One's Out Here Dealing With These Daily Issues&Struggles

Kristi10

General Member of the Public

Rating: 5

We found cleft advocate ten years ago after our twenty week ultrasound showing our son would be born with a cleft lip and palate. This group of people were so welcoming , funny, supportive, encouraging and understanding. They continue to be the place we turn when we need advice, support or just understanding.

Client Served

Rating: 5

I have felt so fortunate to have such wonderful people that I could get support from and ask questions .If not for this group I do not know what I would have done because there is no one in my area that could have given me the support and advice that I have recived I feel very bless to have come across this group

Debra Shiveley Welch

General Member of the Public

Rating: 5

Our adopted son came home when he was seven-days-old. Although many would say that his face was not "perfect," to us he was beautiful. Chris was born with a moderately severe clefting of the lip, gums and hard and soft palates, left side.

Ignorance is self-defeating. Chris was turned down by six other couples because they wanted a “perfect” baby, and in their ignorance, they passed up just that – the perfect – baby, our son.

Be that as it may, we were still concerned about being able to do all we could for our baby. Education was paramount, we knew that, but we needed more than education; we needed empowerment.

AmerFace accomplishes just that. As parents, we need more than step-by-step answers about lip closure on a baby, or getting your child to drink from a glass before palate closure; what do we do during those long months of healing from bone graft to keep our children comfortable and engaged when all they want to do is run and play? How do we handle bullying, speech therapies, self-image and what can we feed our children when they are not allowed solids for a stretch of time? What questions should I ask before each surgery?

Yes, I can get an education on line and at the library, but how do I educate my heart to help my child? Through AmeriFace and their FaceBook group CleftAdvocate. And that’s exactly what they help us to become: advocates for our children.

Nora11

Client Served

Rating: 5

I love this organization! Great to the families and children. My family is exrremely greatful. Thank you for all you do!

ashjayt

Client Served

Rating: 5

In 2002 my son Jayton was born with a bilateral cleft lip and palate. It was a complete surprise so we definitely were not prepared. We live in a small community so children being born with a cleft are few and far between, so with that said, our hospital was not prepared either. We were basically sent home with the Haberman bottle and a smile. Thank goodness I found cleft Advocate and Debbie Oliver. Without Debbie and her passion to create such a wonderful organization I would not be where I am today. I am a strong mom and have an even stronger son due to her knowledge, & the connection with other families. Being able to jump online and ask a question and receive a handful of responses was a god send. I APPRECIATE and VALUE the support of cleft Advocate and AmeriFace.

Client Served

Rating: 5

In October of 2001, my son was born with a cleft lip and palate. I was a single mother and I was terrified. I stumbled across many organizations through the internet, but none that made feel as comfortable and welcome as AmeriFace. Debbie Oliver and the people I met through the network changed my life. They felt like family- and to this day, still do. I honestly don't think I could have made it through my son's early years without the advice, support, friendship, and love of this group. Every question I had about my son's care was answered from someone who had been there. And now, I am one of the "old timers" and I get to help others! Amazing!

Soozy N.

Client Served

Rating: 5

To start Ameriface has been awesome to our family. I love Debbie Oliver and everyone who has touched our lives and helped us. In April 2007 my son was born with a unilateral cleft lip and palate. The nurses in the hospital didn't know how to feed him and I thought I would end up feeding him through a straw or cup. The nurses there put a tube in his nose to feed him. One of the nurses that came on remembered a packet that was dropped off at the hospital by this group and asked me if they could call them for me. I said "yes please do". If I wasn't able to get him to eat in the next 12 hours they were going to do a GI tube. I didn't want that to happen. A little later Debbie called me and asked if she could send another parent who had a son born with the same thing. I again said "please do". She sent Monica (my angel in disguise) and her son to see me and my son in the hospital. She then showed me how to feed him and gave me a packet with info. We talked about surgeries and what to expect. We are still friends and she has even taken us to one of my sons surgeries when my husband had to work. I love everyone that I have had the pleasure to meet through this organization. They are such a blessing.

Elizabeth113

Client Served

Rating: 5

In 2007, my son was born with a unilateral cleft lip and hole in his soft palate. There is no worse feeling that being told that there is a problem with your unborn fetus. You feel alone as if this has happened to noone else but you. Finding Ameriface was one of the best things I could have done. It brings a light that you may not have seen before, knowing that there are others like you going through the same thing. You suddenly feel like if they can get through it, so can you. This organization has not only helped me but it has helped me help others going through the same thing. There are so many resources that Ameriface has brought to my attention for my son, that I didn't even know existed. I am so incredibly thankful that is organization exists.

Gina22

Client Served

Rating: 5

Great organization! Joined after a 20 week ultrasound should my son cleft in 2006. Now at 6 years old, we have developed life long connections and friends that I cherish. This groups has provided myself and family wonderful support and resources.

Melanie20

General Member of the Public

Rating: 4

I joined this when my son was born in December 2010 with Bilateral complete cleft lip and palate (hard and soft). Their facebook page has helped me to prepare for all that I have had to go through. I love being able to ask questions AND share all our successes with them and how they all understand. I know I will be using them many times in the future.

Yesenia S.

Client Served

Rating: 5

The work this organization does with families is amazing.

Carolyn35

Volunteer

Rating: 5

I discovered cA/Ameriface when my daughter was 12 yrs old and had to have a bone graph due to her cleft lip & palate. Debbie Oliver and other cA members helped me get through one of the worst times of my life. It was great hear from other families who had already gone through the surgery and could talk me through it. Whenever I had a question, it was was answered. And I have made some awesome lifetime friends, some I've met in person and others I've met online. But I cherish all of their knowledge and friendship. I give cA/Ameriface a 5 star + rating

Volunteer

Rating: 5

I joined cleftAdvocate back when it first started because my youngest daughter (who's now 12) was born with a unilateral cleft lip and aveolar ridge. The support, information and life long friendships I've made because of them is priceless. I've learned so much from them, their volunteers and the information they provide that I've become a volunteer, too. Helping someone who's just starting to navigate the healthcare system is so rewarding.

Ashleigh D.

Client Served

Rating: 5

AmeriFace is wonderful and has been so beyond helpful to my family. The day my daughter was born we were so confused and had no idea what was going. We had no idea my daughter had a cleft palate till hours after she was born and Debbie came to our rescue with bottles and tons of information on clefts and the organization. She also provided us with a list of wonderful doctors. We are very thankful for AmeriFace and all that they do.

Gina21

Client Served

Rating: 5

My Son has Crouzons Syndrome and Ameriface has been a tremendous help to our family. We have learned so much from the family conferences they put on in Vegas. How to deal with insurance to get needed medical help for our son, resources to help with costs, other families to network with and workshops geared to the age of each child, including those not affected in each family. My boys have made great friends at the conferences and look forward to them each year to reconnect. Because of Ameriface we have meet other families with the same rare conditon our son has that we would have never been able to meet otherwise. Our son has come a long way from the first conference...crying when we left him in his workshop to now helping other kids know where to go and when, dancing on the dance floor, performing in skits, playing in the pool and lounging pool side. All things normal/average kids do but things that were very hard for our son to do until becoming a part of the safe, loving, nuturing enviroment of Amerface. We just can't say enough about how much we love Ameriface and what we have gained from them.

Client Served

Rating: 5

Cleft Advocate was the first online support group we found when y grandson was born with a undetected complete bilateral cleft lip and palate. Four hours from home on a computer in the hotel lobby I found the site and our life changed. Without the support and information available on the list serve, we would have not known there were options for us, and we would never had had the opportunity to accomplish all that was accomplished for the good of my grandson.

Client Served

Rating: 5

When my son was born with a cleft palate, I had no idea what to expect. CleftAdvocate was there to help guide me through the process. It was so reassuring to communicate with other parents who had "been there, done that". I believe in this organization so much that I became a Pathfinder Volunteer to help other parents with their journeys.

Veronica L.

Client Served

Rating: 5

I am so grateful for CleftAdvocate and for Debbie Oliver. This organization truly cares for the families that are facing the challenges of having children with cleft lips and palates. I was an emotional roller coaster when my baby was born; many times, I asked myself what did I do wrong? Did my emotions have anything to do with my baby being born that way? Did I take any medications that I shouldn’t have? Is this in my family’s genes? All of these questions were questions that I was able to get answers to by attending a conference here in Las Vegas for children born with a cleft lip and palate through CleftAdvocate. My daughter was born a month before they had a conference here in Las Vegas so this was great blessing. Hannah was born with a unilateral incomplete cleft lip and cleft soft palate and the information and help we received as a family was unbelievable. We were able to learn how to feed my baby and what to expect from every surgery she was going to have. My beautiful Hannah is 3 years old now and she is such a blessing to all of us. So grateful to this great organization that truly cares and helps families go through this journey by providing resources, information and letting us know that we were not alone raising a child with a facial difference. Thank you!

Client Served

Rating: 5

The people of this organization are like family. Years ago we were able to go to their annual conference it felt so good to be around so many people that understood as a parent and as a patient. I made lifelong friends its so great to have a place where my child would feel accepted and not alone. Its nice to have a place where I don't feel alone either. The founder and her family of this organization are exceptional! !!

Jeanette A.

General Member of the Public

Rating: 5

I am new to the cleftAdvocate group on Facebook but as a new to cleft related issues mom, I am very grateful that this group exists. My September baby has a unilateral, incomplete cleft lip and we are facing our first consult next week. I'm anxious and nervous but I deal better with the unknown through research and education so I love having a place to get opinions and experiences from others who've been through what we are facing. I've already asked questions and others have been quick with support and comments and I've already felt some relief with learning. Even though when we tell people about our son's cleft lip, others will tell me "oh, so-and-so that I know had that" so it seems so common yet we know no one personally that's been through it so it can feel lonely at times. I think AmeriFace is doing a great job not just with the technical side of things in terms of diagnosis, correction, etc. but they are really taking care of the personal side of things too for the children as well as the parents and the family as a whole. It is a wonderful thing!

Christy C.

Client Served

Rating: 4

I really enjoy CleftAdvocate. I have a son who is 2, born with both cleft lip & palate. I enjoy reading through all the comments people leave & seeing how everyone's individual stories compare to ours. I've learned a lot, & been able to get ideas as to why to bring to surgeries so we are prepared. (we fly from Alaska to Portland for surgeries.)

Client Served

Rating: 5

I love the Cleftadvocate and all the help I've recieved from members as well as Debbie Oliver. Anytime I have a question or concern I know I have somewhere to turn. The informative & immediate responses back regarding my son's surgeries, health insurance coverage, speech, and bottle weining have been so helpful. I can't say enough great things about the organization and what it means to me and my family.

Client Served

Rating: 5

I can't put into words what Ameriface has done for my family over the past ten years. As the mother of a child with a unilateral cleft lip and palate I didn't know where to turn when he was born in 2002. This organization and Debbie Oliver quickly came to my rescue. Within the first week of my son's birth I had connections to other mothers and specialists in the field of clefts. We were able to get feeding support and bottles donated to us through this organization. Today we still utilize Ameriface for support with ongoing surgical care, orthodontics, speech, etc. We have made many great friends along the way. I am so grateful for Ameriface.

Client Served

Rating: 5

When my grandson was born with a (surprise) bilateral cleft lip and palate we were very fortunate to find CA on the web. We were really beyond fortunate. Words can't describe the help, support, knowledge and advice we received. From our experience we have been able to pay it forward to someone else, many times along the way.