CINCINNATI, Ohio ( Ivanhoe Newswire) - Imagine being so disfigured you couldn't close your mouth and when you ate, food came out of your eye. That was the reality for one baby. It was something her surgeons say they've never seen before. Now, a one-of-a-kind procedure paid off.
Ask host mom Gina Denlinger about baby Asmaou and she talks about her personality.
"She's a very calm, sweet content baby," Gina Denlinger told Ivanhoe.
But the reason this child's traveled five-thousand miles from Africa is because of her appearance.
"She's from the city of Ouagadougou which is the capital of Burkina Faso," Gina said.
Asmaou was born with afacial cleft. It not only affects the lip and palate, but the entire face and the underlying bone.
"If we fed her solid food, it would come out in the bottom of her eye," Gina said.
Plastic surgeon Brian Pan of Shriners Children's Hospital in Cincinnati took on the challenging case.
"There's a lack of tissue as well as bone in the mid-face and then obviously there's a cleft in her lip," Dr. Pan said.
Since Asmaou's eye didn't close all the way, she also risked blindness. With little on the books about her condition, doctor Pan took what he knew about pediatric plastic surgery and created a one-of-a-kind procedure for Asmaou using her existing skin and tissue. Her initial five-hour-surgery was carefully planned out, taking into account her need for future surgeries.
"This process for her is going to be over the next 18 years of her life as she continues to grow," Dr. Pan said.
Now just three weeks after her surgery she has a face to make her sweet personality.
"I couldn't imagine what she would look like with everything put back together," Gina said.
Asmaou is set for her next surgery sometime this summer. Then she'll head back to Africa until she needs another procedure. Children's Miracle Missions West helped Asmaou find a host family here in the states. For more information on how you can help kids like her, log onto www.cmmwest.dot.com .
BACKGROUND: Oro-facial clefts are birth defects where the mouth, or roof of the mouth, does not form properly while in the womb. A cleft is a separation in a body structure, often resulting from the failure of tissues to grow together properly. Oral facial clefts may involve the lip, the roof of the mouth (hard palate) or the soft tissue in the back of the mouth (soft palate). Oro-facial clefts are one of the most common birth defects in the United States occurring in 1 of 750 births. (Source: www.ccakids.com, health.utah.gov)
SYMPTOMS: The major symptom of a cleft lip or cleft palate is a visible opening in the lip or palate. Other symptoms include: feeding problems (especially with cleft palate), problems with speech development, dental problems, including missing teeth, especially when cleft lip extends to the upper gum area, recurrent Otitis Media, and hearing problems. A doctor can diagnose cleft lip or cleft palate by examining a newborn baby. A newborn with an oral-facial cleft may be referred to a team of medical specialists almost immediately after birth. Rarely, a partial or "submucous" cleft palate may be left undiagnosed for several months or even years. (Source: www.thirdage.com)
CAUSES: The lip and palate develop separately, but both form very early in fetal development. Oral facial clefts occur 5 to 9 weeks after conception if tissues in the developing mouth fail to merge together and fully fuse. The cause of oral facial clefts is thought to be caused from several reasons including genes as well as environmental factors. Oral facial clefts are often associated with other birth defects as part of a syndrome. More than 200 syndromes are associated with orofacial clefts including Stickler's syndrome, 22q11 deletion syndrome, Van der Woude syndrome. Often syndromes associated with oral facial clefts have a recognized chromosomal or genetic cause. (Source: health.utah.gov)
TREATMENTS: Due to the many variations in clefts, there is no specific cure or treatment for the cleft repair. However one plastic surgeon is setting the bar in facial cleft repair. Plastic surgeon Brian Pan of Shriners Children's Hospital in Cincinnati is helping children with facial clefts. Since doctors do not have a solution's manual for this type of birth defect, Dr. Pan uses his experience for coming up with a solution for repairing clefts.
"There's no cookie cutter way of dealing with each patient and you have to do it truly on an individualized basis. Each operation is tailored for the patient," Dr. Pan explained. (Source: www.cincinnatichildrens.org, interview with Ivanhoe Broadcast News)
Dr. Brian Pan, from Shriners Hospitals for Children in Cincinnati, talks about a new procedure that is giving one little girl a chance at a normal life.
Tell me about Asmaou.
Dr. Pan: Asmaou is a six month old girl who initially came to us with a pretty rare condition. One of the groups up in northern Ohio that does medical missions found her and they presented her case to us to see if we could help her.
Why did you decide to take on this case?
Dr. Pan: Asmaou has a pretty rare condition. She has what's called facial clefting, and there are various types. She has a bilateral four ten tessier cleft. It involves the mid face. It can involve the mouth and the eyes as well as other structures inside the mouth.
What was it like working on this case?
Dr. Pan: Working on this case was actually pretty intellectually stimulating as well as challenging. She has a very rare condition and so there's really not a whole lot written about the best way or best technique to treat these patients. Every patient has to be addressed individually. You have to try and meet all the needs for that particular patient.
How challenging was this case?
Dr. Pan: I think what made this such a unique and challenging case is number one, it involved both sides of her face. Often times these are unilateral conditions where it just affects one side of the face. For her with both sides being affected it wasn't actually the same on both sides. The left side was clearly more severe than the right. What these clefts involve is generally the lower eyelid, there's a lack of tissue as well bone in the mid face and then there's a cleft in the lip. What made her case so challenging was that on the left side there was more tissue missing than on the right side. The other thing was children who have this condition often have visual problems, and that can sometimes lead to blindness if they are not treated early enough.
Was this a one-time operation?
Dr. Pan: One of the other aspects that makes this a really challenging case is that this process for her is going to be over the next eighteen years of her life as she continues to grow. The tissues that we put together are going to change and stretch differently, and that's really difficult to predict. Her operation needs to be staged. We'll need to fix her palate around a year of age, we'll need to put some bone in her upper jaw as soon as her teeth start coming in. That will be around six to seven years of age. Then depending on how things progress and how she grows, we may need to do jaw surgeries. Unfortunately this is not a one-time operation where she'll be finished. We have to continually address her needs as she continues to grow.
How could this help future similar surgeries?
Dr. Pan: One of the aspects of this case and about Asmaou that makes her so unique is that each one of these patients are so different. There's no cookie cutter way of dealing with each patient and you have to do it truly on an individualized basis. Each operation is tailored for the patient and interestingly this is probably a one-time thing. Cranial facial surgeons can do this case, it's just that you have to come to the right place or approach the right people.
How exciting is this for you?
Dr. Pan: One of the truly gratifying things about taking care of Asmaou was number one, taking care of a person who comes from a place where these types of operations and health care are not available. I think the other thing was from a personal perspective. Her case is so rare that this will probably be a once in a lifetime opportunity to take care of a patient with the problem that she has.
How many do you think are born a year with this?
Dr. Pan: There's only I think 50 cases in the surgery literature about this.
Is this more of a rare case than a breakthrough?
Dr. Pan: Yes it's one of these rare things. There are just a few papers written about it. You have apply the principles and see what other people have done and what you think has worked in their hands while knowing your own limitations and abilities.
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