GEN-01  This is a link that will take you to a booklet published by the Cleft Palate Foundation and is a great resource of information regarding genetic testing, causes and treatments of cleft lip and/or palate.

Like the many families of children with birth defects, the CDC also wants to find out what causes them. Understanding the factors that can increase the chance of having a baby with a birth defect will help everyone learn more about the causes. CDC coordinates, funds, and collaborates on one of the largest studies in the United States―the National Birth Defects Prevention Study―to understand the causes of and risks for birth defects, including orofacial clefts.

The causes of orofacial clefts among most infants are unknown. Some children have a cleft lip or cleft palate because of changes in their genes. Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy.

Recently, CDC reported on important findings from research studies about some factors that increase the chance of having a baby with an orofacial cleft:

• Smoking – Women who smoke during pregnancy are more likely to have a baby with an orofacial cleft than women who do not smoke.
• Diabetes – Women with diabetes diagnosed before pregnancy have an increased risk of having a child with a cleft lip with or without cleft palate, compared to women who did not have diabetes.
• Use of certain medicines – Women who used certain medicines to treat epilepsy, such as Topiramate or Valproic acid, during the first trimester (the first 3 months) of pregnancy have an increased risk of having a baby with cleft lip with or without cleft palate, compared to women who did not take these medicines.
• Family history – Parents with a family history of cleft lip or cleft palate face a higher risk of having a baby with a cleft.
• Race – Cleft lip and palate are most common in American Indian and Asian children. Black children are least likely to have a cleft.
• Sex – Males are twice as likely to have a cleft lip with or without cleft palate. Cleft palate without cleft lip is more common in females.
• Being obese during pregnancy –  There is some evidence that babies born to obese women may have increased risk of cleft lip and palate.

There is a lot of information on the internet. There are studies that have been done to list possible causes of a cleft lip and/or palate but it’s difficult to to pinpoint an exact cause. I, for one, racked my brain trying to figure out what I did wrong, what I could have done differently, read labels of vitamins, etc. and at the end of the day it doesn’t make a difference. It happened.

Instead of looking back and trying to get an exact reason as to why this happened was not going to do me or my baby any good.  What I needed to do was look forward, have a plan, and put things in place to make things easier on us as a family dealing with this. If I can offer any advice to you it would be to not beat yourself up by playing the blame game. Yes, you are the one carrying this baby and everything you do has an effect. However, the facial cleft forms within the first trimester and most women do not even realize they are pregnant until about 6 weeks. There is no magic pill or formulation that you could have taken to prevent the cleft formation and you are not this bad person that did something to deserve this. As much information as there is, doctors are still not certain what it is exactly that causes cleft formation and are unable to offer information as to prevention.

Do not spend a great deal of your energy trying to pinpoint an exact cause. You should be taking care of you and this baby the best way that you can. Get rest, eat right, take your prenatal vitamin, make and keep all of your prenatal appointments and ultrasounds, and prepare for baby. Your baby feels everything that you feel. You do not want to feel despair, anger, or disappointment the duration of your pregnancy. Let those feelings be what you feel and then let it go. You are having a baby. A beautiful baby that is a light growing inside of you. Let that light shine and shine brightly. This baby is yours and needs you. You are truly already a parent and this baby is relying on you to do whatever you can to take care of him/her. So take care of you, too.