Disparity but not despair

On Friday evening, a 19-year-old mother and her husband brought their 6 week old infant directly to the Africa Mercy Ship, seeking emergency care for their malnourished and dehydrated child. Their son was born with bilateral cleft lip and palate and his condition resembled that of the infant in this photograph, also a former Mercy Ships patient. The infant was so ill, weighing only 2.5 kg or 5 1/2 pounds upon arrival. Infants born with this condition are unable to breastfeed effectively due to the large gap in their upper lip. In addition, with cleft palate, there is a large opening in the roof of the infant's mouth, connecting the nasal passages with the mouth, affecting breathing and placing the child at risk for frequent infections and death. The parents were from a distance away in the north of Benin and brought their infant to a hospital there but could not afford the prices for hospital treatment. The hospital referred the parents to the Africa Mercy Ship and they made the long trip, arriving at the gangway of the ship in the evening. The infant was in critical condition, lethargic, extremely thin and dehydrated as evidenced by the sunken fontanel on the top of his head. While the Africa Mercy Ship is not considered an emergency department, the infant was admitted to the ward and the doctors were unsure if the child would survive the weekend. I had the opportunity to assist with the care of this child while working Friday, Saturday and Sunday overnight shifts. I have never held, seen or cared for a child so tiny before. An IV was inserted into the tiny hand of this infant to supply rehydrating fluids and antibiotic as he had a fever and pneumonia was suspected with his condition of cleft lip and palate. Soon after the IV became dislodged and we did not attempt to insert another. We began to feed him very small quantities of infant formula using a syringe. Through the weekend, we woke him every 2 hours to feed. I worked with Becky, a nurse from England on Saturday night. Neither one of us had any pediatric experience aside from training during nursing school, and we had never cared for neonates. Sarah from Australia did have such experience as an ICU and experienced Mercy Ships nurse. She paved the way for the infant's care when I worked with her on Friday night. Nurses were teaching nurses how to care for this child from shift to shift. Sunday night, Emily from Canada, a pediatric nurse joined Becky and me. Together the 2 or 3 of us would huddle around the infant, one holding him in the correct position to facilitate swallowing while the other fed him, 1 or 2 milliliters at a time, for a grand total of 20 milliliters of formula and 10 milliliters of water per meal. I remember learning in nursing school that an infant's stomach is the size of a walnut when born. With this child we had to be particularly careful not to overfeed him due to the adverse effects of a condition known as refeeding syndrome which can happen when people who have been starving are refed too quickly. As the weekend progressed, he began to look more alert and bright-eyed. Nurses have been teaching his mother about mixing formula and feeding him using a syringe. The plan is to continue these feedings with the hope that he will gain weight and be able to tolerate surgical repair of his cleft lip which would allow him to drink from a bottle. Repair of his cleft palate would not take place for many more months. Most striking to me about this situation was the disparity between the highly technological medical care this child could receive in my home city of Boston and the care we were able to provide with our limited resources on the ship. I imagined that back home this child would receive intravenous nutrition (total parenteral nutrition), be connected to external and internal monitoring, have a central venous access line and labs drawn daily and undergo CT scans of his brain and ultrasounds of his heart to determine any other possible congenital abnormalities. I thought about my sister Karen, a pediatric dietitian at Children's Hospital, well versed in prescribing TPN for patients with gastrointestinal abnormalities. But here we were, with our syringe and our Enfamil formula and lots of prayer, feeding this little guy by hand, literally one drop at a time. A desperate situation, but not one of despair. It is beautiful to see the love the child's mother has for him, she cuddles him, kisses him and sings to him. She sleeps in the same bed with him. In our training we learned that children born with cleft lip and palate or other physical differences may be viewed as cursed in this culture. The child's condition may be considered as a punishment for something the parents have done. Children with such conditions are often outcast and hidden and a source of shame for their families. We learned that infants born with congenital deformities have been buried alive. What a beautiful contrast to see such loving parents who sought care for their first child. I am very hopeful about this little guy and he seems to have turned the corner. Please keep him in your prayers. I do believe divine intervention brought him to the ship. Thank you for all of your encouragement, support and prayers for the work here in Benin. I am so grateful! We couldn't do it without you!