Jayden E., 1

Jayden is now four months old. He is the first born of his teenage mother. He was born in Kalokol, Turkana County. His mother delivered him through a spontaneous vaginal delivery, but she recalls that he did not cry immediately after birth and his head, which was slightly bigger than normal at the time of birth, has been increasing in size ever since. His baby does not feed well and barely moves his upper and lower limbs. Other older mothers in her village, including her own mother, told her that this isn't normal and advised her to take Jayden to the hospital. She sought medical attention at Kokuselei Dispensary, 140 km away from her home. At Kokuselei, she was informed that the condition of her child ought to be managed at a higher level health facility. From Kokuselei, Jayden was referred to Lodwar County Referral Hospital, another 200 km away. There, too, unfortunately, doctors recognized the severity of his condition and recommended urgent specialized care at Moi Teaching and Referral Hospital (MTRH) in Eldoret—360 km further. Upon arrival at MTRH, they were informed about the cost of treatment but they realized that they could not afford that. The missionaries working at Kokuselei Dispensary reached out to Helpster Charity. Helpster Charity stepped in to assist, identifying PCEA Kikuyu Hospital as the best available facility within their network, whom they have a partnership with, to manage Jayden’s condition. This meant another grueling journey of 290 km from MTRH, Eldoret to PCEA Kikuyu Hospital, Kikuyu. In total, Jayden and his mother have traveled 990 km in search of life-saving treatment. Jayden has been diagnosed with hydrocephalus, a dangerous condition caused by an abnormal buildup of cerebrospinal fluid (CSF) in the brain. This excess fluid causes his head to enlarge, placing alot pressure on his brain tissue. His condition is further complicated by an acute subdural hematoma, which can lead to severe neurological damage. Without urgent intervention, Jayden risks developmental delays, blurred vision, and life-threatening complications, including death Jayden is also suffering from severe malnutrition. His mother, a young girl with little support, has done everything in her power to save her child. Now, she is reaching out for help.

Jayden’s case has been a complex and challenging journey. Unlike typical hydrocephalus cases, he was diagnosed with meningitic hydrocephalus—a severe form caused by inflammation of the spinal cord, making treatment more complicated. It was later discovered that Jayden’s mother had been seriously ill during the final trimester of her pregnancy, which may have contributed to Jayden's condition. His situation was further worsened by the presence of an acute subdural hematoma, a critical condition that poses a high risk of neurological damage. Without timely medical intervention, Jayden was at risk of developmental delays, impaired vision, and potentially fatal complications. He was also severely malnourished upon admission. Jayden underwent two major surgeries at PCEA Kikuyu Hospital. After the initial procedure, there was notable improvement; he could blink and breastfeed, abilities he lacked at admission. Unfortunately, the first shunt placed to relieve pressure from fluid buildup became infected and had to be removed. He was started on intrathecal antibiotics, and following a cerebrospinal fluid (CSF) culture that turned negative, a second shunt was inserted. However, he later developed a subdural hematoma and had to return to the operating room for its evacuation. Complications continued when the new shunt became infected, requiring removal and placement of an external ventricular drain. Once his CSF was clear again, Jayden was transferred to Kenyatta National Hospital (KNH) for specialized care. At KNH, he developed another spinal infection, which was treated with intrathecal antibiotic therapy. At the time of this report, the infection had been cleared, and Jayden was awaiting another surgical procedure for shunt reinsertion. His medical journey has been long and difficult, but we remain hopeful that this resilient little boy will eventually overcome these challenges.

Jayden’s case was highly complex due to the severity of his hydrocephalus, severe malnutrition and his young age, necessitating specialized intervention from a senior multidisciplinary team of a neurosurgeon, consultant anesthesiologist, pediatrician, nutritionist, infectious disease specialist, physiotherapist and a social worker. The treatment process was challenging and required multiple critical procedures to ensure the best possible outcome. Following the initial insertion of the shunt, complications arose when the skin at the insertion site deteriorated, leading to an infection. As a result, the shunt had to be removed, and an external ventricular drain (EVD) was placed to facilitate cerebrospinal fluid (CSF) monitoring. The shunt was only reinserted after laboratory tests confirmed that the CSF was clear of infection. Additionally, Jayden developed a subdural hematoma (SDH), a known complication of shunting procedures, particularly in cases of normal pressure hydrocephalus (NPH). This required surgical evacuation of the hematoma to prevent further complications. Further complicating his condition, Jayden was malnourished and had feeding difficulties, requiring specialized nutritional support. A nutritionist was involved to improve his weight and overall health, with increased meal volumes and feeding frequency. His condition has since improved, and he is now breastfeeding well. Given the complexity of his case, Jayden underwent three separate surgical procedures, significantly contributing to the overall cost of treatment. The need for specialized care, multiple surgeries, post-operative monitoring, and nutritional rehabilitation all led the high invoice amount.