There is nothing like the anticipation that fills a delivery room for expectant parents. The miracle they have spent nearly nine months awaiting is moments from arrival. The doctor, doula, or midwife is at the ready, and prepared to present a small bundle of joy into the world. For many, it’s one of the greatest moments in their lives. But for thousands of families, that joy can be tinged with a shadow of sorrow.
July is National Cleft and Craniofacial Awareness and Prevention Month. According to Cleft Lip and Palate Association, 1 in 700 people worldwide will be born with a cleft lip and/or palate, roughly .14% of the population. To put those numbers into perspective, think about New York City, which has over 8 million people. If we applied these statistics to NYC, we would wind up with 11,855 children with cleft conditions in one of the most developed places on the planet.
A Life Without Surgery
Now imagine similar numbers in countries like Guinea, Senegal, and Sierra Leone, where there is only one doctor per 10,000 people (about 26 times less than the United States). Not only is this very treatable condition an inconvenience, but without access to the surgery needed to correct it, it becomes a burden to the child and the families as they are forced to navigate life marked as different from everyone in the community.
Over our 40 years of bringing hope and healing to those in need, we’ve seen story after story of children forced to grow up with their cleft and palate conditions. Sometimes the stories are hopeful, full of parents who support their children through the scorn they face from their peers and communities. Sometimes those children grow into adults able to pursue jobs and families of their own.
But other times, the outcomes carry more heartache. Some children born with cleft and palate conditions, especially in more rural areas, are not only mocked but are considered to be “curses” on their families. For some, that means being shunned by family members. For an unfortunate few, it could mean being abandoned completely.
When families refuse to succumb to superstition, they are still faced with the difficulties of feeding an infant, often unable to breastfeed successfully. Without sufficient nutrition, these children wind up undernourished and leave their parents frantic for a solution.
Baby Mame Diarra’s Story
Baby Mame Diarra is one of many infants who struggled to eat due to her double cleft lip. Unable to breastfeed, Mame’s mother, Ndiate, developed a system to keep her baby fed.
“What I did was buy some milk, prepare in the teacup and a small spoon, giving her to drink,” Ndiate said.
Ndiate knew this system was too slow to nourish her child, so she began looking for a bottle that could help her. After searching, she found a single pharmacy in the whole country that sold bottles that would help Mame eat – each costing nearly $50. Ndiate traveled miles to the pharmacy, spending over $40 just to get there, but when she arrived, she was told it was for nothing.
“When we came, the stock was finished,” she shared. “They did not have it in the pharmacy, so we had to wait for one month.”
Though many living in developed countries know the financial struggle that comes with the birth and infancy of a child, few understand what it is like to search for a single bottle in a country of over 16 million people. It’s this lack of access that weighs heavily on the people we serve throughout sub-Saharan Africa.
Ndiate knew with her limited resources that Mame would never find surgery in her country, but still she did everything in her power to keep her child safe. Despite her efforts, Mame continued to lose weight.
When Mame arrived at our hospital ship, she was immediately sent to the infant feeding program.
“She came in our tent when she was really severely underweighted,” Cobie Waasdorp, a pre-op nurse, said. “It was so special to see how she grew as she gained weight. The mom was so grateful for everything that we did.”
Once Mame was an appropriate weight, she received surgery to repair her cleft lip, leaving the baby smiling and her mother full of hope.
“She has a whole future ahead,” Cobie said. “I’m very happy that we helped give her a future. We gave hope and healing and I’m very happy for that.”
Healing for the Future
There are thousands of stories like Ndiate and Mame’s, and we see many on board our hospital ships. But thanks to our volunteers, and prayerful partners, more and more of these stories end with a happy and renewed beginning.
See how you can help bring hope and healing.