In Chile, cleft surgeries and comprehensive cleft care have been postponed to ensure patient safety amidst COVID-19. The needs of patients with clefts, however, cannot be postponed.
Nurse Lisette Jerez cares for patients with clefts with Smile Train partner GANFIT (Grupo de Ayuda a los Niños con Fisura Labio Palatina) at Hospital Hernán Henríquez Aravena. She works alongside Dr. Pilar Itrurriaga, who leads the surgical team — and she is stepping up to ensure that her patients continue to receive the care they so desperately need. This is her reflection on the impact of COVID-19 upon her patients, and the work she is doing to support them.
Since minute zero of the pandemic alert, COVID-19 has generated chaos not only because of the disease and the great fear of infecting ourselves or infecting our families and patients, but also because of the impact on hospitals and clinics.
The postponement of cleft surgeries has generated anguish and fear for families of children with cleft palate — fear that they will be "abandoned" and left to their fate.
As an interdisciplinary team, we have resolved to fight not only against COVID-19, but also against the abandonment of our patients and families. Although we know that they cannot be the first priority for the medical supplies and personnel right now, we try, with the means available to us, to change the reality of many children who depend on us. We cannot fail in supporting them — in supporting the nutrition of a rural, low-income newborn whose parents are very poorly educated (the reality in a large percentage of our region), knowing that if it is not us who will support them, there will be no one else. Otherwise, in one or three more months, when all this is over, they will probably be malnourished, infected, or in a much worse scenario.
Currently, modernity has given us several tools that we can use in our favor, resources usually used for leisure, which are massive and low-cost. Social media is the key to continue our work. WhatsApp, video calls, and the ability to send photos for free was the solution. It is possible to maintain the great amounts of attention in a call, whether to maintain contact, impart tranquility, learn about advances in patients’ nutrition, teach new techniques of diet, research changes in treatment, or promote adherence to treatment and communication.
There is nothing like staying together and confident in difficult times, having someone to ask if this or any other symptom is normal or not, if they should go to the emergency room or if it is safer to stay home until everything is over. Over time, we have learned that it is not only the disease that must be treated, but also the individual, the child, the mother who cries in distress for her son, her family for the scarce resources, the chaotic reality we live in, the father who is out of work because of the quarantine and suffers without being able to support his family to eat. These are difficult times and my mission is to support how I can. Although I am not at this moment on the front line against COVID-19, I have committed myself to keep children with clefts alive and well, along with their families. With love, words of comfort, instructions, advice, in whatever way I can, 24 hours a day, seven days a week. The families know that we are there.
Unfortunately, I cannot attend to all of them; there are many, around a thousand babies waiting for cleft surgery. The parents of the smallest newborns, infants (55 born during 2019, and 10 in 2020) who are old enough for surgery, keep my cell phone full of messages that keep my soul and conscience clear.
Today, these are not messages of doubts — they are thank-you and good wishes messages for me for the team, for the hospital. For all those who in one way or another are giving this great battle.
The reality of my little ones will be to delay surgeries, speech treatment, dental treatments until the hospital can attend to them, until the city and the world are safe for them again. When that time comes, we will have a huge job, waiting lists, patients who will undergo primary surgeries with unfinished orthopedics, etc. But I hope that each of them and their families stay healthy and in good condition.
At this moment, from home with my two children, I give strength to my little patients, dedicating my thoughts to them, to my elderly relatives, isolated by precaution, and to part of my team that take care daily of patients in our hospital, trusting their experience, their knowledge that we will get out of this science fiction and thriller movie. Waiting for the call that means leaving my own little ones to attend to others, in person, where required.
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