Monday, June 30, 2008


According to the CDC, cleft lip and palate now comprise the most common birth defects in the United States. Around the world, on average, about 1 in every 500-750 live births result in a cleft. Clefts are most common among Native American and Asian racial groups while Africans have the lowest prevalence rates.

The cause of a cleft is still unknown, although recent
research findings have found there to be a specific gene that increases threefold the occurrence of clefts.Some medications, when taken by the mother during pregnancy, have been linked to clefting. Smoking is another factor. Furthermore, recent studies have shown a link between clefts and environmental factors such as air pollution.

In our case, we don't really know why this has happened to BOTH of our children. I have met many parents who are in the same boat we are. We don't have family history, I have never smoked or drank in my life, and I have never taken medication while pregnant (other than prenatals). It may be forever a mystery to us. After meeting with a geneticist, we have been told that there is some sort of genetic trigger that is causing our children to have a predisposition to clefts.

I think that is one thing that makes dealing with a cleft so emotionally hard- is that there aren't a lot of answers right now as to why it occurs. I wish there were, but there just aren't. A mother naturally is inclined to blame herself for anything going wrong with a baby she has carried for the last 9 months, and I strongly advocate mothers to not burden themselves with this guilt. I blamed myself for 2 years after my first son Jimmy was born. I didn't understand the cleft and blamed myself for starting my prenatals too late into the pregnancy. It wasn't until our second son was diagnosed with a cleft via ultrasound (whom I had started taking prenatals with 3 months prior to conception), that I finally realized this wasn't about me doing something wrong, but something happening that was out of my control. I honestly wish I could take each new mommy by the shoulders and urge her over and over again to not blame herself for this. It's not your fault, and you did nothing to cause this.

Now, back to the basics. While the cleft anomaly can "run in families" or show in conjunction with syndromes (e.g., Pierre Robin Sequence, Crouzon Syndrome, Treacher Collins), most often a cleft shows itself as an "isolated incident". This means that, at first investigation, there is no family history and no indication of other health problems. This is also known as a nonsyndromic cleft. Both of my sons have been diagnosed as nonsyndromic.

When someone is born with a cleft, they can be born with a cleft of the LIP, the PALATE, or both. It is actually most common to be born with both the lip and palate affected.

When someone is born with a cleft LIP, they have an opening in the upper lip. Normally the lip is formed by the union of two tabs of tissue that grow in from the sides of the face with a central tab that grows down from the tip of the nose. This union takes place around 4-6 weeks of embryonic development. Here is an excellent picture of these fusion points:

When I was in the hospital, shortly after my first son was born, my brother Marcus (who was in Medical School at the time), gave me a wonderful explanation of how the cleft occurs. He told me that the formation of our face is actually quite complex. I remember he held his 2 hands together in a cupping shape and and proceeded to fold his fingers inward explaining that there are a number of tabs that fold inward and latch. These folds give rise to our nose and our mouth. Here is another picture depicting a 5 week fetuses (this is what we all looked like at 5 weeks old!) that shows the places where our lips latch very clearly:
Picture is from the book "A Child is Born" by Lennart Nilsson and Lars Hamberger 4th Ed., page 97. Caption reads: Now we can see the eyes, nose and mouth- a developing face. The nostrils have formed above the opening that will be the mouth, but the groove between the nostrils and the edge of the top lip has not yet been effaced... 30 days, 7 mm/0.26 in.

Another way to get a good idea of what I am talking about, is to take a look at your face in the mirror. See those 2 small lines coming down from your nostrils to the tips of your cupid's bow of your lips? Those lines are called the philtrum and are "scars" from the folds where your face came together during embryonic development. This fusion should take place in the fourth to sixth week of pregnancy. If the union is not complete, the baby is born with a cleft lip.

Now, there are different kinds of clefts that can occur with the lip. Both of my boys have differing clefts which I have always found to be interesting.If the cleft extends up into the nostril it is called a ‘complete cleft lip’. If the nose is not affected it is called an ‘incomplete cleft lip’. When both sides of the lip don't latch, then it is a bilateral cleft lip.When it is just one side that doesn't latch then it is called a unilateral cleft lip as depicted in the pictures above. With my boys' cases, they were each born with a unilateral cleft lip, but on opposite sides. So Jimmy's right lip decided not to latch, and Johnny's left lip. Also, Johnny was born with a complete cleft, while Jimmy's was incomplete.

When a cleft of the palate occurs, it can affect the hard and soft palate. Here's a little way to explain where your hard and soft palate are. Open your mouth wide and look into a mirror. Place your tongue at the top of your mouth, near the front by your teeth. You will notice this is hard and is likewise your HARD palate. If you look at your hard palate in the mirror, you may even be able to see the whitish line down the center, where your palate "zippered shut" in the embryonic stage of development.
Now look further back in your mouth. Move your tongue from the hard roof of your mouth back towards where it becomes soft and elastic. This is where your soft palate begins. If you look far enough back, you will see your little uvula (the little ball which hangs down) and that is the end tip of the soft palate.
Like the lip, there are varying forms of a cleft of the palate. Some babies are born with just the soft palate affected by a cleft. Other babies are born with the entire roof of the mouth (both hard and soft palates) affected. For both of my boys, they had a cleft of the hard and soft palate and the uvula ball was split into two. There are also very minor forms of clefts of the soft palates which include a submucosal cleft and a clefted uvula. I couldn't find a picture of a submucosal cleft, but I did find one of a clefted uvula:

Sunday, June 29, 2008


There are a number of wonderful online support groups readily available. I am actually part of 6 different groups! And I recommend anyone who's life is affected by a cleft, to join one. My husband and I have had so many questions answered and we have made some life long friendships via these groups.

Now, you don't have to join 6 groups like I me- in fact you might want to just start with one (I have just found myself wanting to connect in a variety of ways). Below are a synopsis of various available groups and how to join them (they are all free):

This was the first email group that I joined. The list is run by Joanne Green, founder of and mother of 3 adopted children all born with clefts. She has a vast knowledge of clefts and always has had such wise, comforting words to share with all the new (and old) moms out there. She also has a wonderful children's book called "
Lippy the Lion" which describes perfectly the feelings of a mom or dad of a child with a cleft lip and/or palate.

To join Widesmiles, go to
, scroll down to the "Network With Others" bullet, and then click on the "cleft talk" tab. From there, it will take you to a page where you will want to click on the "subscribe to cleft talk" link.

This is a very large group, and you will get a lot of emails each day, so you might want to start a separate email or file folder in your inbox for the mail to go to. This is a wonderful list- very much like a big family. Debbie Oliver, who founded CleftAdvocate, runs this list. She has a daughter who 20 years ago was born with a cleft. Debbie is incredibly friendly and very connected and full of resources. She's done a wonderful job of training
pathfinders across the US who advocate cleft awareness and education, as well as advocating herself. Cleft Advocate has a great page called the state resource page which is gives an organized list of links for your specific state.

To join CleftAdvocate, go to, scroll down and click on the "Family to Family connection" tab located in the left side bar. Once you are there, read the disclaimer, and then click on the "click here to start" link.

This email group is actually geared towards adults with clefts, but I have found it interesting to "listen into". It has given me some insight and understanding of what my children may feel as they grow up with clefts.

To join cleft club, go to, and click on the blue "Join this group" tab.

This is a local group to Utah which I have loved to be a part of since our boys' surgeon, Dr. Morales, is located in Salt Lake City, Utah at Primary Children's. Jenny Simmons, mom to 4 kids including Jack (born with a cleft), runs the group. She's great- with a fun sense of humor. Local groups are wonderful- they give you a chance to meet fellow local moms in person for play dates and gatherings. I also have felt that local groups have been great in that you can share experiences and questions in regards to your mutual surgeons/teams/hospitals.

To join Kids with clefts-Utah, go to
this page, and click on the "join this group" tab.

This is a great local group to the Virginia and DC area. We have utilized this group while we have been living in DC the past 2 years. The group is run by Paula Miller, mom to 4 kids, one of whom has a cleft. Virginia Smiles has an annual summer picnic in the Northern Virginia area, which is very fun to go to and meet other families in the area.

To join Virginia Smiles, go to
this page, and click on the "join this group" tab.

This is a group I actually started myself. I found various other families via the online groups mentioned above who also had had more than one child born with a cleft, like my husband and I (geneticist call us multiplex families). I desired to create a group where we could gather and exchange thoughts and experiences. And most importantly, help each other not feel so alone. The group is currently very small, but I hope as more and more families find us, it will grow.

To join More than one cleft, go to
this page, and click on the "join this group" tab.

Once you join a group, don't be bashful, and send out an "introduction" email introducing you and your family!

Tuesday, November 14, 2006


Our first son Jimmy was born with a unilateral cleft lip and palate. We didn't really know a thing about what a cleft was until he surprised us the day of his birth with his wide smile. After things settled down a bit after his birth and we were home from the hospital, I dove into researching online about raising a cleft affected baby. I was so grateful to others that posted their experiences, shared pictures and advice online. We were so lost to begin with, and those little glimples into the future that we got from other's experiences really helped a lot and comforted our hearts and minds. We still have quite a road ahead of us, but I wanted to be able to compile pictures and experiences into one web page, so I created this one, "cleft notes". Hopefully it can be of assistance to any other families out there learning about a cleft, just as we too were reached out to.

-Jimmy's Mom