Monday, June 6, 2016

Don't take no for an answer. There has to be a reason why and a cure for children born with cleft lip and/or palate



I was just sent a DVD by The Smile Train to review their videos and provide feedback. They wanted my opinion on what documentaries I liked, etc. So, today I watched about 8 videos/documentaries on children born with cleft lip and/or palates.

After watching these videos, I asked myself, why is there no cure? 

The Smile Train completed surgery on over 1 million people. 1 million people since 1998!

One of the videos said that India has 35,000 patients each year that are born with a cleft lip and/or palate. 35,000 babies born in India each year with a cleft lip and/or palate.

The Smile Train, Operation Smile, Mercy Ships, etc have done a wonderful job providing surgery for these children and young adults. 

However, everything that I have read, there is no definitive cause as to why someone is born with a cleft lip and/or palate. It may be due to maternal diet, genetics, or environmental conditions. 

Seriously, in today's age of technology and medical advancements, no one has found the root cause? No one?

No pregnancy registry has been created that connects the dots? 

 The lip forms between the fourth and seventh weeks of pregnancy. Could it be as simple as giving women folic acid supplements during the first 3 months of pregnancy when the lips are formed during this time?

Sometimes you need someone from the outside to ask the simple question of why these children continue to be born with a cleft lip. Has anyone taken the time to document the data and review it in hopes of coming up with a cure?  Have we forgotten about this huge global problem?

Maybe I'm naive, but it can't be this hard to find the exact reason why children are born with cleft lip and/or palate. I'm 55 years old and was born with a cleft lip and palate. If, one Foundation treated 1 million patients since 1998, then there must be millions of people globally that have been been born with cleft lip and/or palate.

I'm watching the news about the Zika virus and the first case of microencephaly was reported. Zika can be spread from a pregnant woman to her fetus. This can result in microencephaly, severe brain malformations, and other birth defects. The Zika virus is on every news channel and newspaper. People are thinking of boycotting the Olympics in fear of getting the virus.

In January 2016, the United States CDC issued travel guidance on affected countries, including the use of enhanced precautions, and guidelines for pregnant women including considering postponing travel. Other governments and health agencies also issued similar travel warnings advising women to postpone getting pregnant until more is known about the risks of the Zika virus.

Conversely, this is what is on the US Centers for Disease Control and Prevention website regarding cleft lip and/or palate.

CDC continues to study birth defects, such as cleft lip and cleft palate, and how to prevent them. If you are pregnant or thinking about becoming pregnant, talk with your doctor about ways to increase your chances of having a healthy baby.

If someone is out there that wants to find a definitive reason why children continue to be born with cleft lip and/or palate, please reach out to me. I am willing and able to help. 

Won't you please join me in trying to find a solution to this huge problem that continues to affect thousands of children each year.