Health for All the Children (SPTLN)
Providing life-changing, comprehensive, continuous support for 100+ children in Nicaragua with complex medical needs.
Medical care in limited-resource environments is challenging in all of the expected ways – insufficient equipment, minimal staffing, low inventory of medications – but also in its limited access to specialty services. Too often physicians in health posts or well-meaning practitioners on medical campaigns refer a family to seek follow-up care for their child with a pediatrician or other sub-specialist.
For many of these families, accessing care that may even be free or low-cost is still prevented by the barriers of travel expenses and time away from work. Further adding to the challenge is that a sick or complex child is stressful to a medical provider not specifically trained in how to attend to their condition. This stress can lead to burnout and frustration on both the part of the medical staff and the families.
Through Salud para Todos los Niños (SPTLN), we have created a new approach to healthcare for children with chronic medical conditions. Founded in partnership with RGHA (Richmond Global Health Alliance), we worked directly with health posts in Chacraseca, Leon, and other parts of the country to enroll over 100 children with chronic or complex medical needs in a project to improve their care. Our international team of pediatricians and nurses both in Nicaragua and the United States reviews patient cases, gathers histories from parents, evaluates the patients and provides necessary information on care to the families. We use our connections both locally and abroad to get scarce specialty medical equipment. We also partner with pharmacies, facilitating discounted or free medications for our program participants. To further ensure this project’s success, we conduct specialty pediatric clinics in conjunction with local Health Posts and Special Needs centers three times a year.
Throughout the year, we maintain continuous follow-up with the patients and their families. Through this partnership between FNE, RGHA and the Health Post, we coordinate all care, referrals and diagnostic studies and respond to ongoing clinical questions in between brigades. We believe that our efforts will continue to build and go beyond ubiquitous public health approaches of vaccination and health maintenance to more directly address the complex medical needs of our patients.
For more information on what we do or how to support our patients, please contact the RGHA SPLTN Lead, Brittany Corrigan at email@example.com, or our Field Coordinator, Elissa Lara at firstname.lastname@example.org.
Learn about some of our patients!
This is Kendra. Kendra is a 6-year-old with a history of cerebral palsy (right-hand dominant spastic quadriplegia), severe developmental delays, seizures, and poor weight gain. She is a sweet girl whose smile can light up a room. Kendra likely had significant damage to her brain either before or as she was being born due to no fault of her mother. Kendra’s symptoms of her brain damage are severe and she needs a lot of care. All four of her limbs are contracted and she has little-to-no control of her movements. As a consequence of poor muscle control, we worry Kendra often swallows into her lungs instead of into her belly. Her poor swallowing causes severe and frequent bouts of pneumonia. She can chew and swallow some, but has not been able to maintain her weight or grow very well. Due to her muscle weakness, she also struggles to have bowel movements on a regular basis and she often gets a swollen and tender tummy. With all of that bacteria hanging around and not leaving her body, she has had lots of bladder infections over the past year.
For Kendra’s care we have been focusing on quality of life and keeping her comfortable. Her family has a lot of needs to continue to care for Kendra. She needs regular physical therapy, medicines for seizures, constipation and muscle relaxers, high calorie formula, diapers and wipes, and specialty medical visits with GI and neurology. SPTLN supports her with all of these needs.
Darwin is a sweet, bright, and creative 14-year-old boy with the unfortunate diagnosis of Duchenne muscular dystrophy (DMD). DMD is a progressive disease that causes worsening weakness of the muscles. Most DMD patients live into their late teens until their muscle weakness becomes severe to the point of heart and lung failure.
At 14, Darwin’s DMD is progressing. He is now wheelchair-bound and has mild heart weakness. He sees a cardiologist and takes steroids which are known to help slow DMD’s progress. Over the past year, Darwin has struggled with depression. His older cousin recently passed from DMD and his mother is also struggling with progressive muscle weakness which may also be secondary to muscular dystrophy. Darwin has struggled with no longer being able to play soccer with his friends, walk to school and participate in other school activities. He watched his cousin and now his mom slowly waste away knowing that he as well is headed down the same path.
As with all of our patients, we focus on improving Darwin’s daily quality of life. He requires counseling and psychological support as he struggles with the progression of his disease, daily steroids, wheelchair modifications, transport to and from school and specialty visits with cardiology and genetics. Darwin loves to do crafts, so we try to keep him stocked up on supplies! He often showers us with handmade pictures, foam baskets and foam flowers.