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By Stephanie Novak/MEDILL


Cleft palate surgery: A prism for a mother's love

by Stephanie Novak
Nov 29, 2012


CLEFT_PHOTO

By Stephanie Novak/MEDILL

Baby Erick is awaiting surgery for a cleft lip and palate but his mother is stuggling to help him gain the weight he needs to undergo anesthesia. 

In the middle of Mexico's rural mountains, there is a baby who will never open his eyes, and a mother who loves him very much.

You can see it when she holds him, when she laughs about his likes and dislikes, and when she tries to feed him and he struggles to swallow.

And you can feel it when she talks to his doctor.

Lucía, 22, is in a seemingly impossible situation. After giving birth to her son Erick nine months ago in Huixtla, six hours from her home in the mountains of Soledad, she had a hemorrhage after a difficult pregnancy. She was sick long after she delivered her son, who was born with a cleft lip and palate—a gaping hole in the roof of his mouth and lip—as well as a deformed ear and no eyeballs. He also has dextrocardia, a congenital heart defect. His heart is on the right side of the body instead of his left. Despite speculation, no one knows the exact cause of his birth defects.

But as Lucía sits and talks to Dr. Jafet Arrieta, the Director of Operations for Partners in Health Mexico and one of Erick's physicians, her son is not a statistic, a poor child who might be one of the many who gets surgery through a national cleft palate campaign. He is a patient of Partners in Health, with doctors working to improve his care.

“This pregnancy was complicated, and he didn’t develop his eyes so he doesn’t have eyes, like the eyeballs, and he also has cleft palate,” Arrieta said while she drove through Mexico’s rural mountains to visit patients.

Just the task of seeing a surgeon that can repair Erick's cleft lip and palate is Herculean.

Lucía traveled nine hours through mountains on unpaved dirt roads to reach Tuxtla, the capital of Chiapas, Mexico's southernmost state, to arrange these appointments. The hospital would only schedule them if she came in person.

She then took Erick to Tuxtla, twice. Each time, she hoped Erick would get medical attention and a much needed cleft palate surgery. Despite having appointments, the hospital in Chiapas turned her away. Administrators told her the doctor was not in, or that they could not find the schedule confirming her appointment.

After two attempts to have a surgeon operate in Tuxtla, “they asked her to come back again, but she was like ‘there is no way’. So we started to provide milk for him and sometimes we provide diapers because he needed to gain weight,” Arrieta said.

Then, with the help of Partners in Health, she tried to get the cleft palate surgery through national campaigns that perform cleft palate surgeries in rural communities.

She was turned down yet again. Doctors refused to perform the surgery because Erick’s low weight made it extremely risky for him to be under anesthesia. Although he needs to gain weight in order to have the surgery, his cleft lip and palate make it very difficult to swallow. This part of Mexico does not have services commonly available in more developed countries, where parents can easily consult with a nutritionist or find special feeding bottles to help their cleft palate children gain weight. 

Various organizations throughout Mexico sponsor campaigns to provide cleft palate surgery. “She got an appointment for him for another campaign in February,” said Arrieta, referring to February 2013. “But the condition is that he gains weight.”

Partners in Health supports the patients, coordinating logistics including transportation and other care. They currently give Erick papilla, a rich powder containing protein and carbohydrates that is mixed with water and will help him gain weight. 

And time is important. According to physicians in Chicago, it is crucial that the surgery be done before a child is two.

“We have seen that if we don’t repair the soft palate by a certain age, then that child will have problems with catching up with speech,” said Dr. Russell Reid, a craniofacial plastic surgeon and researcher at the University of Chicago.

“We don’t want to go past 18-24 months in fixing soft palate,” he added. The soft palate is the softer area at the back of the roof of the mouth, and is critical for speech, Reid said. If a patient doesn’t have the surgery, “they will not be able to form certain words like a normal child.”

But despite their popular appeal, cleft palate campaigns are not without problems.

“What I have found on a lot of these medical trips is that you have surgeons who rarely do the cleft lip and palate surgery in the U.S. and are going on these medical trips,” said Reid.

“I’ve seen anybody go on these planes, they go in and they don’t really know what they’re doing,” he added. 

Because of this, Reid said, surgical patients in developing countries can receive low quality care.
   
“Really only experts should be going on these trips, not just anyone,” said Reid. “I rarely go on these trips because of that suboptimal care.”

Even with expert care, however, the problem is not fully solved. In the United States, cleft lip and palate patients often receive comprehensive care, which includes attention from disciplines other than surgery. Nutritionists, orthodontists, ear nose and throat doctors (ENT’s) and psychiatrists are often consulted.

If Erick doesn’t gain enough weight to have the surgery by February, Partners in Health will take this interdisciplinary approach, consulting with a nutritionist to help him gain weight. Until February, Arrieta and a team of doctors in Mexico are feeding him the high carb and protein diet of papilla. They are also teaching Lucía how to feed him. Erick visits PIH’s doctors weekly.

“We asked this ENT doctor what can we do about his ear,” said Arrieta, noting that any surgical option would also require a weight gain. Nothing can be done about his eyes, she said. She and a group of Partners in Health doctors have also consulted with physicians in Monterrey, a city in the northeastern Mexican state of Nuevo Léon. If Erick does not gain enough weight for his operation in February, they will consider hospitalizing him to help him gain weight, and prepare for another appointment.