It was dark as Maria Fernanda and her dad left their home in Guatemala city to make the 6 hour drive to the Chalchuapa area in neighboring El Salvador. They left their home that morning with anxiety, fear but most of all with hope that this time, Maria Fernanda would be able to get her cleft lip and palate fixed.
Maria Fernanda is one of 3 children but the only one born with a crippling disorder called Osteogenesis Imperfecta. It is a condition where the bones are as brittle as wafer. She was also born with bilateral cleft lip and palate, another congenital anomaly. Her parents had taken her to several local doctors including several International medical missions that came to Guatemala City and Antigua to have her cleft defects repaired. Much to their disappointment, they were always told that it could not be done. The risk was extremely high given her bone condition. She already had sustained several fractures in various bones in her body and many were in varying stages of healing.
However, Maria Fernanda’s dad, never lost hope and never gave up. When a relative living in El Salvador heard about us, they informed him and without another thought, he decided to come to the screening day at The National Hospital Chalchuapa.
Here, we met this delightful young girl, carried by her loving dad, who narrated his exhaustive history and journey with tears. After examining her, the team consisting of myself, anesthesia and surgery met and discussed how best we could care for this young girl. Our motto was: “First do no harm “.
We each had experience in our own careers caring for patients with Osteogenesis Imperfecta but this was a first with someone who also needed their cleft deformity repaired. After getting the necessary full body scan for fractures and noting that her C Spine was intact and normal, we discussed the significant risks involved with her dad. We would only operate on the lip and see how she did. After he consented, we made special arrangements to protect her bones. Even simple procedures such as an IV placement were done with extreme care and precision.
Maria Fernanda did very well and had her bilateral cleft lip deformity corrected. It was a team effort of our doctors and nurses including the support of the hospital that makes this patient’s story remarkable, not to forget this dad’s unwavering faith and hope.
Maria Fernanda was discharged after 2 day hospital stay, smiling, hand to her face when having pictures taken ( her signature style ). Many of us had tears in our eyes as we waved good bye , knowing that she was a special patient we took care of but to Maria Fernanda and her family, it was nothing short of a miracle.
Dr. Helen John-Kelly
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