• Every three minutes a child is born with an orofacial cleft.
• Some form of clefting occurs once in every 500 – 700 births.
• Clefting occurs more often in boys than girls, and more Asian, Latino and Native Americans than those of African-American descent.
• Orofacial clefting can be associated with other problems, including feeding difficulties, middle ear fluid buildup and hearing loss, dental abnormalities, and speech difficulties.
Eventually most discussions about orofacial clefting arrive at the same point—what causes the condition? Unfortunately there isn’t an easy answer. Clefting is a multi factorial disorder, meaning it can have multiple causes. There are behavioral (drug and alcohol use) and nutritional (lack of folic acid) factors that can impact the occurrence of clefting. But there are genetic causes that aren’t yet understood. In short, there is no way to prevent it entirely.
Since prevention is not (yet) possible, the next best option is to eliminate or mitigate as much of the condition as you can. This is where Dr. Anne Marie Kuijpers-Jagtman is changing lives.
Anne Marie is an orthodontist who specializes in treating orofacial clefting. She’s currently a Professor and Chairperson of the Department of Orthodontics and Craniofacial Biology at the Radboud University Nijmegen, in Holland.
Anne Marie became interested in the condition shortly after graduation in 1978. By 1980 she had become the head of the cleft team in her local hospital, which is now the largest treatment facility in Holland.
She is also the chairperson of Sumbing Bibir, a Dutch non-profit foundation that treats orofacial clefting in the undeveloped areas of Indonesia. The connection between the two countries might seem random to those not up on their European colonial history. Indonesia was a Dutch colony until 1945, generating an unusual yet enduring connection between the two countries.
There’s also a need. Indonesia’s unique geographic features actually pre-dispose the populace to a higher risk of clefting. The country is made up of some 14,000 individual islands, meaning proper care and education during pregnancy isn’t always possible. In addition, most of the islands are made of volcanic rock, making it harder to grow the leafy green vegetables and fruits that are high in folic acid.
The Sumbing Bibir foundation—which is the Indonesian phrase for cleft— plans, funds and performs annual missions to individual islands to treat those born with orofacial clefting. This is a massive undertaking as they often need to ship in all of the equipment and supplies. Before they treat a single individual, they assemble an entire makeshift operatory basically from scratch. It is nothing short of a technological and logistical miracle.
Then comes the clinical talent.
When a child in the modern world is born with a cleft, they typically get a team of medical professionals. The team includes a pediatrician, an orthodontist, a maxillofacial surgeon, a plastic surgeon, an otolaryngologist, a speech pathologist and a dentist. That list does not include the numerous nurse aids, social workers, geneticists and psychologists that will be present in the child’s life.
Treatment begins within days after birth, and it’s not unusual for an infant to undergo multiple surgeries in their first 18 months of life. Treatment comes to its end only when approaching adulthood at 18 to 20 years of age.
The treatment model of Sumbing Bibir is condensed into two surgical events for the patient. They first operate on the lip, followed by a minimum six-month healing period, then address the palate. Yet even when condensing twenty years of treatment into just two procedures, the correction of the facial deformity is still dramatic and life changing.
In addition to serving as Chairperson for the foundation, Anne Marie is also a member of the clinical travel team. Her most recent mission involved five days in the field treating patients, which were bookended by two 42 hour travel sessions.
Each trip seems to feature its own signature moment and this one was no different. Anne Marie and her team were scheduled to operate on a 43 year old woman with a completely open cleft. As fate would have it, the woman was the final patient they had scheduled…and they just ran out of anesthesia. They offered the woman the opportunity to go through with the operation under local anesthetic only.
Having endured 43 years of humiliation, isolation and shame, there was no way the woman was going to let the opportunity pass. She agreed to undergo the surgery with local anesthesia only.
Anne Marie recalls that the woman remained utterly motionless during the entire two hour operation. At the end of the procedure, Anne Marie handed the woman a mirror. The instant she saw her newly constructed face, she began weeping with joy. The deformity that defined her existence for more than four decades was suddenly and permanently removed from her life. Having already experienced a lifetime of sorrow, the woman now had an entirely new life in front of her.
For all the joy Anne Marie derives from helping the less fortunate, she is also exposed to the disappointment that occurs when the decision is made for who gets treatment.
People come from everywhere when they learn there’s a mission from abroad planned. But because there are so many conditions outside the doctor’s control, the group must select the individuals with the best chance of survival, typically the healthiest.
The initial selection process is made six months prior to surgery and final selection is done shortly before operation. While the surgery is the most visible aspect of treatment, it’s not the only one. The foundation maintains three continual goals that they are always working towards: treating orofacial clefts, performing research and educating local medical professionals. While all are important, Anne Marie believes education has the potential to make the biggest difference.
“If we are successful in educating the local doctors, you won’t need charities anymore. The work can be done in the country, by local doctors.”
Recently the foundation also established a five year goal of starting a cleft palate clinic on the Indonesian island of Lombok. With a population of over 2 million people, there could be as many as 5,000 individuals with orofacial clefting.
Because the island is so impoverished and cost of living is so low, the foundation will be able to launch the clinic for just 200,000 Euros (about $265,000). It’s a relatively modest sum when compared to the costs of western medicine, but it’s still a sum that needs to be raised.
Sumbing Bibir raises money in many ways. In addition to basic monetary/equipment donations and benefit dinners, they will be hosting their first ever duck race. Fortunately there’s no actual ducks and it’s a race in the loosest sense of the word. The mission will be selling individually numbered “rubber duckies” for 5 Euros each. The ducks will be released in the river, upstream from the foundation’s home in Nijmegen. The first duck to make its way down the river and cross the finish line wins a prize for the person who purchased it.
While money is what makes things happen, the money can’t do anything without first having people in place. Sumbing Bibir is always on the lookout for people who want to help make a difference. Anne Marie mentions fund raising (generating ideas and organizing events), public relations, financial book keeping, copywriting and web services as areas of need. She is really happy with the continued support from Universitas Indonesia, especially Professor Benny Latief. They support one or two social missions per year providing manpower and facilitating the local organization. Fortunately, the group is fully staffed and well organized with clinical talent.
When it comes to the charitable treatment, Anne Marie stresses the importance of working efficiently. She tells clinicians who want to get involved that it’s important to be a part of team that treats multiple cases (she suggests a minimum of 40 per year). The need is so great that just treating individual cases in isolation allows a lot of potential efficiencies to go unused.
In addition to the foundation, Anne Marie is also establishing a more personal legacy. Her daughter— also an orthodontist—is specializing in treating orofacial clefts as well.
How You Can Help
You can visit the foundation online at SumbingBibir.com. If you’re interested in being a part of Sumbing Bibir, you can contact them online, via email Anne Marie directly at firstname.lastname@example.org or by calling +31 6 1993 3955.
This article published in 2013 OrthoWorld.