November 27, 2014 2:30 pm

Meet the patient: Baby Zhamira Dueñas

Written by  Molly Trerotola
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332-1-zhamira-dueñasDuring his internship with MEDLIFE in the summer of 2014, Aaron Sanfield went above and beyond what his intern responsibilities entailed. Without planning for it, Aaron's dedication to MEDLIFE and the individuals it helps changed the course of a baby girl's life. It all started with a simple conversation between Aaron and Carlos Benavides, the Director of MEDLIFE in Peru.

One day, Carlos confided in Aaron, recounting a story about a patient whose case was troubling him at the time. Carlos explained that he had exhausted all of his resources, but was still grappling to find medical care for a five-month-old baby girl's rare illness. For the man who always seems to have a remedy—or at least a way to find one—it was upsetting him to be at a loss for the ‘next step'. During their conversation, Carlos unfolded the entire story, beginning with when baby Zhamira's symptoms first began.

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Baby Zhamira's was only three months old when her seizures started. Her family was shocked by the drastic turn her healthy life, as it arose unprompted by any significant event. The convulsions frightened Zhamira's grandmother Sabina; she thought her first and only grandchild was dying.

A trip to the hospital landed Zhamira in every department under the sun to identify the cause of her seizures. Doctors first conducted extensive exams in cardiology. When she passed the exams that would determine it a heart issue, Zhamira was rerouted to neurology, another trip that yielded unsatisfactory results. The family repeated this routine many times. They made their rounds through the hospital for two weeks to no avail; Zhamira's seizures persisted.

Zhamira was finally transferred to endocrinology for more diagnostic exams. The results revealed hormone levels indicative of persistent hypoglycemia. Zhamira's body was producing an excess of insulin and not enough glucose to maintain a healthy blood sugar level. Her plummeting blood glucose levels were cutting off sugar to her brain, resulting in repeat seizures.

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Although the exams shed light on the root cause of Zhamira's symptoms, the discovery was bittersweet. Zhamira's Pediatric Endocrinologist, Dr. Lu, was the bearer of bad news: hypoglycemia is extremely rare in Peru, and there may be no cure for Zhamira. Though a medication that could stabilize her level exists, it is not manufactured in Peru and there is no easy way of obtaining it, especially for a family with low economic resources.

Zhamira's doctor, Dr. Lu, prescribed her a temporary fix: feeding every two hours to stabilize her glucose levels and prevent seizures, though her new feeding schedule was not without consequence. The constant feeding, combined with unstable hormone levels, resulted in significant and unhealthy amount of weight gain for an infant.

Zhamira's grandmother Sabina rejected Dr. Lu's news. No geographic boundaries or economic obstacles would prevent her granddaughter from getting the best care. With the little information she had, Sabina set off determined to find a solution. Sabina accessed the Internet and conducted extensive research across medical forums, YouTube videos, articles, etc.; she scoured the web to find any information related to hypoglycemia.

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Through her research, Sabina discovered there are doctors in the United States who specialize in hypoglycemia in children. Normal treatment in the United States is generally handled with diazoxide, a medication that decreases the body's insulin release and is most effective for infants and young children such as Zhamira. This was her answer.

Determined to obtain the elusive diazoxide medication for Zhamira, Sabina rummaged through her mental archive of connections to the United States. She remembered a MEDLIFE staircase project in her neighborhood during which she had met many Americans. Wondering if any of them could help, Sabina went out on a limb and reached out to the organization.

Carlos heard of the baby's unusual case and took it upon himself to seek out a solution. Under Dr. Lu's advising, Carlos reached out to his network of connections with physicians in the United States. To his disappointment, he struggled to find anyone willing to take on the complicated job of prescribing an expensive medication to be shipped abroad.

With little positive response to Carlos' efforts, Zhamira's medicine seemed out of reach. Just when Carlos was at a loss for finding an answer to Zhamira's case, it emerged from within MEDLIFE—with an intern, Aaron Sanfield. You never know who is going to have the solution.

After hearing Zhamira's story, Aaron realized that he could potentially be the key to accessing the medication Zhamira needed. Aaron explained to Carlos that his father is an Endocrinologist in the United States and has experience caring for patients with hypoglycemia.

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Aaron reached out to his father, Dr. Jeff Sanfield, with Zhamira's story and her need for the diazoxide medication. Although Dr. Sanfield understood the predicament and sympathized with Zhamira's case, at first he was hesitant to offer his assistance due to obvious legal stipulations and potential consequences with shipping a medication overseas.

While the family awaited an answer to their proposal, Dr. Lu prepared them for an alternative, but likely outcome: A life without the medication. For Zhamira this meant continued weight gain, feeding every two hours to control her blood glucose levels and subside the seizures, potential diabetes in the future and brain damage from the seizures—an inevitable low quality of life. Unable to imagine that life for Zhamira, her family bided its time with patience and hope for the medication to come through.

Meanwhile in the United States, after speaking with Dr. Lu, Dr. Sanfield was made aware of the urgency of Zhamira's condition, and her life's projected trajectory without the diazoxide. Dr. Sanfield reached out to Dr. Chris Cook, a pharmacist at the hospital where he worked. Together, Dr. Cook and Dr. Sanfield teamed up with Dr. Lu to prepare the diazoxide for shipment to Lima. The two doctors became very passionate about Zhamira's case during the process. The opportunity to improve the quality of life for those less fortunate reminded them of why they entered the field of medicine.

After six months of frequent communication between Dr. Lu and his correspondents in the United States, Dr. Sanfield and Dr. Cook, the medication finally shipped from the United States and arrived at the MEDLIFE office in Lima in the beginning of November of 2014. With news of the arrival, MEDLIFE staff and Dr. Lu immediately planned to rendezvous with Zhamira and her family at a children's hospital in Lima to administer the first dose the diazoxide.

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The meeting was an inspiring moment for MEDLIFE; it was the culmination of many parties' hard work and dedication to help someone in need. Though only 11 months old at the time of the reunion, Zhamira weighed 31 pounds, around 10 pounds overweight for a baby of her age. Despite this obstacle, she is an energetic, delightfully pudgy, adorable baby. She spent the entire visit testing her novice walking skills and grabbing at faces and hands. A curious and attentive baby, Zhamira makes unwavering eye contact, broken only when she cracks an angelic smile coupled with gurgles and giggles that are so cute you can't help but return the smile.

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Zhamira demonstrated amazing patience as Dr. Lu weighed and measured her and administered the medication with Zhamira's mother Gisela's assistance. After a quick conversation about the projected positive effects the medication would have by stabilizing her insulin blood glucose levels, the visit concluded with a reflection on the whole experience.

Dr. Lu was overwhelmingly appreciative for the ease and efficiency communicating with the doctors from the United States. He said their generosity and attention to Zhamira's case was incredible. Sabina and Gisela became very emotional as they extended their tremendous gratitude towards the people who cared for Zhamira's health and made obtaining the medication possible: Aaron Sanfield, his father Dr. Sanfiled, Dr. Cook, Dr. Lu, and MEDLIFE. “I don't know how to thank you,” said Sabina. “My granddaughter has a chance at a normal life.”

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Since our reunion at the children's hospital at the beginning of November, Zhamira has already started showing signs of improvement. With the help of the diazoxide, her insulin and blood glucose levels are normalizing and she is seizure free. MEDLIFE is overjoyed that a problem that previously seemed to have no solution was resolved by the kindness and generosity of many peoples' collaborative efforts.

Stories like Zhamira's remind us why the work MEDLIFE does is important, and that with the determination of many, anything is possible.

Last modified on July 3, 2015 4:29 pm