As many as 20,400 infants are born with cleft lip/palate each year in Guatemala. While easily treatable in rich countries, cleft lip/palate often has tragic consequences for the desperately poor Guatemalans we serve.

Cleft infants are unable to breastfeed and their parents cannot afford formula. In desperation, parents try feeding them various liquids with a spoon, but usually the child cannot receive adequate nourishment.

This tragic situation inspired Partner for Surgery’s Targeted Infant Nutrition Program (TINP). When a cleft infant is born, our trained rural midwife informs the local Health Promoter (see below). The infant is brought to the nearest health center as soon as possible and evaluated, weighed and registered in the health system. The mother then receives either a breast pump or donated formula (if no longer producing milk), special nursing bottles, and detailed instructions. Without the intervention of TINP, these children are likely to die of starvation. While the initial goal of the program is simply to keep the infant alive, ultimately, the goal is to help the infant gain weight and be strong enough to undergo surgery. Health Promoters see each child at least once per month and monitor their weight gain. Within about a year, the child will be ready for surgery. The Health Promoter accompanies the patient and a member of the family, to provide interpretation services and emotional support.

What is Cleft Lip/Palate?

Cleft lip indicates an indentation in the upper lip and can continue to the nose, depending on the severity of the case. Cleft palate, a more severe condition, refers to a gap between the two skull plates that form the hard palate or roof of the mouth. Left untreated, the condition prevents the infant from latching on to the mother’s breast to breastfeed, which leads to malnutrition and starvation. This condition is easily treated in developed countries. But in poor countries like Guatemala, infants who manage to survive suffer from frequent respiratory infections. As they grow older, they will be bullied and never accepted into the community, and in addition, their families are stigmatized. The exact cause of cleft lip and cleft palate is unknown.

Health Promoters, Midwives, Radio, Mobile Medical Missions

Partner for Surgery’s Guatemalan-born Health Promoters live in the remote villages where they work. Recruited for their compassion and drive, and trained in health education, our Health Promoters are passionate about getting help to those most in need, and making sure families bring their children to a Partner for Surgery Mobile Medical Mission.

Our network of Rural Midwives inform our Health Promoters soon after the birth of the child. Finally, Health Education Programs are broadcast in local Mayan dialects and Spanish, and advertise the dates of upcoming Mobile Medical Missions.

Surgical Missions: What is the Surgery, Who is the Surgeon?

Cleft lip/palate surgery closes the palate and nasal cavity and constructs a full upper lip. Partner for Surgery connects the most impoverished Guatemalans living in the most remote areas of Guatemala with international Surgical Teams who perform the surgeries. The Guatemalans we serve (primarily Maya) would otherwise never be reached. The family is provided with a place to stay near the surgery site, and the patient receives 24-hour medical care while in recovery. The Health Promoter then accompanies the patient and the family back to their home, and is available for any necessary follow up. The continuum of care Partner for Surgery provides is unique in Guatemala.

What Does “Being Enrolled in the TINP” Mean?

As soon as an infant is enrolled in the TINP, they are brought to the nearest health center and evaluated, weighed and registered in the health system. Health Promoters provide parents with low- or no-cost formula and show them how to use it effectively. Depending on the medical stability of the child, Health Promoters see each child at least once per month and their weight gain is monitored. This process takes one year on average. When it is time for surgery, the Health Promoter accompanies the patient and a member of the family, to provide interpretation services and emotional support.

The Future of the Targeted Infant Nutrition Program

Successful for those children lucky enough to be enrolled, the number of children having this condition is daunting. In 2012 we undertook important next steps, and have been funded to:

  • Expand the Rural Midwife network, and provide them with training
  • Explore the feasibility of promoting the use of breast pumps
  • Initiate the 1st steps of an epidemiological study to look at incidence rates/geographic cluster occurrence data