Silvia greets us at her front door with a smile and invites us to sit on the bed in her small but well-kept one-bedroom house where she lives with her husband and two little boys. We gently ask her to tell us about the birth of her youngest son, Jose Emanuel. Lowering her gaze, she smiles at the beautiful baby sitting in her lap. At the same time, a sadness flickers across her face as she begins to recount the all too recent battle to save the life of Jose Emanuel.
“Just a skeleton,” Sylvia thought, when she saw her baby boy for the first time on July 26, 2011. Jose Emanuel was born premature and with Down's Syndrome and spent the first 18 days of his life in the hospital. He was released and sent home, but it was then that the complications really began. Sylvia and her husband didn't understand anything about Down's Syndrome, how to care for a baby with the condition, or how it was going to affect their lives and that of their newborn. Jose Emanuel wouldn't eat, he never stopped crying, and his mother didn't know what to do. His health quickly deteriorated and the family returned to the hospital and admitted Jose Emanuel into intensive care. The doctor took one look at her baby and told Sylvia that Jose Emanuel wouldn't recover. His fever was so high that at one point he actually stopped breathing and the entire room thought he had passed away. They placed the baby in an ice bath and miraculously, Jose Emanuel began to breathe again. Another eight days in the hospital and the doctors sent the family home once again – no more prepared or educated than the first time to care for their fragile baby boy.
Sylvia still didn't know how to feed her baby; and after so many hospital visits and medical exams she and her husband weren't even able to afford the baby formula he so desperately needed. Jose Emanuel lost more weight and grew sicker everyday, until finally the hospital referred his case to Casa Jackson. Sylvia knew that Jose Emanuel would only survive if she left him in their care, but her heart broke when she had to walk away from him for the first time. What came next was even harder for Sylvia to understand – the idea that social workers and medical staff questioned the love she had for her child, the belief that she may have been negligent in his care, and the reality that he might be taken away from her.
Over the next four months, Jose Emanuel was nursed back to health by the dedicated staff and loving volunteers at Casa Jackson. Sylvia never missed an opportunity to spend time with her baby, and although money was scarce she made the trip to see him every week. She spent time with the doctors, nurses, and spoke with the social workers, who finally concluded that she was in fact a fit and loving mother – she simply needed to learn how to properly care for Jose Emanuel. Every week, Sylvia watched how the nurses fed him his bottle, how they bathed him, and how they administered his physical therapy. Jose Emanuel struggled every day with a build-up of phlegm in his lungs. The apparatus to help clear his lungs and allow him to breathe was expensive, and although he couldn't live without it, the family couldn't have dreamed of affording it. Volunteers at Casa Jackson raised the money among themselves to buy Jose Emanuel the machine. Each visit, Sylvia asked more questions and the nurses told her everything they knew about Down's Syndrome. “It was shameful for me,” recalls Sylvia, “What mother doesn't know how to care for her own child?” But every week it became easier and Sylvia felt more comfortable and more capable. She says that when he was first born she cried a lot and that she feared for Jose Emanuel because he would always be different. At Casa Jackson, Sylvia began to reflect and realized that their family has been blessed. “For us, Jose Emanuel is normal. He is what we have been given and we will fight for him. If we fight for him, he is going to be an even better little boy than all the rest.”
While Jose Emanuel was recovering in Casa Jackson, a service team from Nuestros Ahijados raised enough money to build the family a new house. When he was finally released, the family had a safe, dry, and clean home to take him to. Sylvia and her husband never dreamed of having their own home, “I am grateful from the bottom of my heart and always will be. This house... Casa Jackson...the nurses... they are like gifts that fell from heaven.”
Casa Jackson is home to some of the sickest and most malnourished babies in Guatemala. With your donations, we continue to provide refuge for babies like Jose Emanuel. Every contribution makes a difference in the loves of the little patients that call Casa Jackson home.
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