HealingForReal

Can Cleft Lip and Palate Be Prevented?

cleftwebDecember 18th 2005, I sat holding 5 (yes, FIVE) pregnancy tests, amazed that they were all positive. We had been trying for another baby for 5 years and I thought it might never happen. The poor OB didn’t know what to do with me when he confirmed the pregnancy and I burst into tears. They were good tears! Everything looked great and the pregnancy progressed as expected. Then, during the routine 18 week ultrasound came the unexpected. The tech was great and said “You know how some babies are born with a lot of hair and others are totally bald and some are long and some are not? Well, this baby will be born with a cleft lip and possibly a cleft palate.”

My initial thoughts were not really complete thoughts. A what? I *think* I know what that means. Do I know what that means? What does that mean??

The tech said he’d pass the information on to my doctor and he’d be in touch. When the doctor called, though, I asked what this all meant and what I needed to do. He told me there was nothing to do until the baby was born and not to worry about it. WHAT? NOTHING to do? For 22 more weeks? I don’t think so!

What I did was allow myself a few minutes to grieve the idea of the perfect baby and then I got to work being the most informed and prepared expectant mom of a baby with a cleft I could be. I read everything, looked at every image online (and freaked myself out a little), visited with the cleft/craniofacial clinic coordinator at Primary Children’s Hospital, insisted on a genetics specialist visit to determine if there were any other syndromes suspected along with cleft lip and palate. I was on it! I learned as much about cleft lip and palate as my brain could handle. Feeding, surgeries, speech, cosmetics, etc.

But, what I learned about the cause of cleft lip and palate was that there weren’t many answers. What they knew was that 1 in about 700 babies in the US are born with clefts. In Utah, that number goes up to 1 in about 470. The suspected cause as explained to me by the specialist at the time was a combination of genetic and environmental factors. But, really, there wasn’t a lot to explain because even scientists still didn’t completely understand.

Our son Joshua was born in August of 2006. He had a unilateral incomplete cleft lip (the cleft was on only one side, some tissue connecting the lip at the nose) and a unilateral cleft palate. He was beautiful to me no matter what and after 5 years of trying, it didn’t matter that he had something different about him. After a couple of days the whole family kind of ‘forgot’ and would wonder what people were looking at when we were out. It was just our life. Joshua would eventually have surgery at 3 months to correct his lip and soft palate. Later, at about 18 months, his hard palate was corrected and he will have one more surgery at age 8 or so to fill a gap in his gum line. He’s a spunky, BUSY boy who loves school and will talk your ear off if you let him. It’s been fun being his mom and the cleft is just part of his great big personality.¬†josh6

A couple of months after Joshua’s birth, we received a letter in the mail giving us the opportunity to participate in a study to see if they could zero in on why clefts occur more frequently in Utah and what could be done to prevent them, if anything. We were very willing and received a kit in the mail soon after. We swabbed our cheeks and answered a few questions and sent the materials back to the university doing the study. Using our DNA and the information provided by lots of cleft families and families of typically developed children, the researchers are finding answers.

 

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So far they’ve learned:

Mothers’ healthy dietary patterns may be important in cleft prevention.

Maintaining a healthy body weight and control of high blood pressure and diabetes are important.

Mothers of a child with a cleft may have a higher risk of diabetes and other medical problems later in life.

Mothers’ exposure to tobacco smoke is associated with an increased risk of having a child with a cleft lip or cleft palate.
(source)

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Those details were HUGE to someone who, just 5 years ago still hadn’t found much information on what could be done to prevent cleft lip and palate.

One of the thesis papers from the study found something VERY interesting to me:

[stextbox id=”bl”]“We found that a lower whole grain intake of mothers was associated with a higher isolated OFC [cleft] risk in their children. The strongest finding was that increased intake of whole grains were associated with a reduced risk of isolated OFCs in a strong dose response manner. Furthermore, higher intakes of sweets were weakly associated and more statistically significant¬†among case mothers than that of control mothers… These findings indicate that increased intake of whole grains along with decreased consumption of sweets during pregnancy may reduce the risk of OFCs in the offspring.”[/stextbox]

 

But, what about Paleo and GAPS and Grain-Free everything? What about Gluten intolerance and Celiac and Crohn’s Disease? Unfortunately, all this study does is show that whole grains are important to a healthy pregnancy. It doesn’t tell us WHAT grains made a difference or how they were prepared. In her book Beautiful Babies, Kristen Michaelis of Food Renegade explains the perils of refined grains and details the proper preparation (soaking, sprouting, souring etc.) of whole grains as they were traditionally eaten. This is a great resource for those who are looking for the best way to incorporate grains into their pre-conception and pregnancy diets.

In the 5 years that I was trying to conceive, I had been on a few different ‘anti-carbohydrate’ VERY low grain diets. I was advised that the over-production of insulin as a result of eating too many carbs was a factor in my secondary infertility. While that has been found to be a valid medical argument, it may also be argued that the lack of whole grains in my diet contributed to the maldevelopment of my son’s lip and palate. The contradictory advice is confusing and could make the nutritional decisions of those trying to conceive even more difficult. If I were trying to conceive now and wanted to lower my risk of having another baby with a cleft lip and palate, I would lean toward a balanced diet of plenty of good fats and proteins from grass-fed pastured animals (meat, eggs, raw milk, butter and cream, etc.), local organic fruits and vegetables and PROPERLY prepared whole grains as suggested in Beautiful Babies,

The findings of this study do support the thesis that proper nutrition can contribute to the prevention of clefts. There is no question that not enough is understood about the causes of birth defects like cleft lip and palate. Likewise, not enough is known about why mothers of cleft babies are at a higher risk for diabetes and other health problems later in life.

When another letter came in the mail last week asking if I would further participate in the study I filled out the form and checked the YES box and stuck it back in the mail in the hopes that someday the samples and information I provide might help in finding the answers to how cleft lip and palate can be prevented. Until then, I will kiss and hug on my cute cleft boy until he won’t let me any more.

This post is shared at Frugal By ChoiceReal Food ForagerHealthy Roots Happy Soul

4 Thoughts on “Can Cleft Lip and Palate Be Prevented?

  1. Catherine on June 11, 2013 at 4:35 pm said:

    This is so interesting. I’m so glad you shared this!

  2. kathleen on June 21, 2013 at 4:59 am said:

    Whole grains could also just be the comparison food for women who ate nothing but white bread/flour, so the ‘whole grains’ aspect of it may just be that those who eat them are more likely to eat fruits, veg, better meats, and those who do not eat enough whole grains eat more sugar, less fruit/veg, etc. It may have absolutely nothing to do with whole grains at all, but a pattern of better eating and choices….possibly non-smokers eat better than smokers….because they are conscious of healthy choices.

  3. Martina on June 21, 2013 at 5:15 pm said:

    At our 20wk ultra w/our second we were asked to come back in two wks for another ultrasound to rule out a cleft as baby’ little hands were in the way. We declined. The posability of him having a cleft NEVER entered our mind. When my FAVORITE OB questioned us I simply said that IF MY BABY was to have a cleft it would change nothing. So, we left her office and the thought NEVER reentered our thoungts. I truely enjoyed my pregnancy and was simply happy to have a sibling to join our 22mo old daughter.

    Ten days over due, our beautiful blessing arrived with a cleft lip and palate. And I have to say that God had a hand in me not knowing. From that moment on I was consumed with pumpings, overwhelming guilt and determined to find answers. If the doctor had known i would have been induced to deliver in a larger hospital hrs away. Instead, I was allowed to be free from anxiety, fear, ect. We did not eat a traditional diet but grass-fed meat, wild caught fish, lots of veggies, fruit, raw cheese, oatmeal ect ect ect. No caffeine, small amount of sugar. A LOT better than average.

    Last summer I had a blood test done that showed protiens bonding together and not being broken down/digested properly. I began GAPS in OCT and have since discovered Dr Natasha Mcbrid’ thoughts on a cleft. She feels that unless a mother’s diet is Extremely Poor it is caused by deficiencies in fat-soluble vitamins and the inability to digest protiens. This little tid bit gives so much hope as like you said, NO ONE HAS AN ANSWER! I’m so glad you are still searching for answers too:):)

    Our little fella will be two in AUG:)

    • admin on June 21, 2013 at 5:24 pm said:

      That’s interesting. I have had the same problem digesting proteins since I started taking acid reducers when I was about 18. I’ve switched to a supplement with hydrochloric acid and ox bile and it has helped so much. I hope not too much yet or the blood they take won’t be a good indicator. This study was based on people’s recollection of their diet, too so there is room for error. Thanks for posting!

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