Q&A with Camila Ventura, Zika Family Caregiver

Camila Ventura is a Brazilian retina specialist who is dedicated to understanding and fighting Congenital Zika syndrome (CZS). Camila’s work with Zika began during the 2015 outbreak in Brazil, when she first reported the ocular findings of three babies affected by the virus during pregnancy. We caught up with Camila to find out more about her past and current efforts to help babies and families affected by CZS. Camila spoke at TEDMED 2017, and you can watch her Talk here.

TEDMED: There has been considerable improvement in our understanding and treatment of Congenital Zika syndrome since the outbreak, especially thanks to the hard work of teams like yours. What are the biggest challenges communities affected by Zika face today?

Camila Ventura: We have certainly made progress not only in understanding the pathophysiology of this new disease and developing vaccines and tests to diagnose the Zika infection, but also learning how to care for children with Congenital Zika syndrome. As I mention in my Talk, it is impossible to care for a child with CZS without an engaged and interactive multidisciplinary team. We have learned that communication between different professionals is essential to plan interventions and potentialize therapies. We have also learned that CZS has a broad spectrum and that there is not a “one recipe” treatment for these children. In other words, treatment cannot be generalized.

We still face many challenges indeed. Our biggest challenge nowadays is getting these families to reach our rehab center at the Altino Ventura Foundation located in Recife, the capital of Pernambuco state. Most of the children are instructed to come weekly for therapies, but because many live in the countryside, dropouts are one of our biggest challenges.

Another important concern is the late complications that some of the children develop. We had at least 15 children who developed hydrocephaly and required a shunt. Despite the fact that the shunt surgery normalized the brain pressure, some of them progressed with vision loss. We also have children with different levels of dysphagia (some requiring gastrostomy). The biggest concern with regard to dysphagia is the risk of aspirating food into the lungs and developing pneumonia. We had 5 cases that died from pneumonia. The last, but not less important, challenge is the uncontrolled and severe seizures that some children present. Seizures bring a lot of concern not only to doctors, but also to families that many times feel impotent and helpless. However, despite all the complications and challenges we are facing, we are very proud of our work with these kids and their families. We now have three of them walking!

TM: What projects and research have you been involved in since you spoke at TEDMED 2017?

CV: Since TEDMED, we received a National Institutes of Health (NIH) grant and started a collaborative research study with the RTI International, a well-known and respected research non-profit organization. The main goal of this study is to follow 200 children with congenital Zika syndrome and their families for a period of 5 years. By assessing each child, we are trying to understand important outcomes such as neurodevelopment (motor skills and cognition), functional skills (activity of daily living, feeding, and sleeping), social and language skills, temperament, and behavior. Another aim of this study is to understand how families have coped with this new challenge and adapted to disability by assessing stress level, family dynamics, and social support. We hope that this study will enable us to provide an optimized habilitation treatment once we identify specific delays in the child’s development and at the same time, provide caregivers with psychological and social support by understanding their specific needs.

P.S.: I gave an interview at RetinaLink after TEDMED and the NIH Grant.

TM: Your team is composed of a multidisciplinary group of specialists, each skilled at addressing one of the many systems affected in babies with Congenital Zika syndrome. What were some of the challenges in bringing doctors of different backgrounds together? Were there any surprising or unexpected outcomes that came as a result of the collaboration?

CV: To answer your question, I need to explain about our history. The Altino Ventura Foundation is a non-profit organization that started in 1986 as an eye center for the low-income population. In 2004, we opened our Rehabilitation Center that used to be run in a small rented house and we were only accredited to perform visual and motor rehabilitations. However, in 2014, we finally moved to a 3-story building owned by us, and that was when we became fully accredited to rehabilitate patients with multiple disabilities in all four domains (visual, hearing, motor, and intellectual).

By then, we already had the different physicians and therapists working at the same place working for the same goals. Also, at the FAV we have always valued teamwork and interaction between our professionals. However, with the advent of Zika, the interaction was intensified, which brought more unity to our work. Thanks to this strong connection, we have been able to see how it has positively affected our children’s outcomes.

Another important aspect that Zika brought to our institution was the possibility of developing our own protocols for Zika. Since we have the oldest patients with Zika, we did not get to learn from others how to treat our patients. Zika empowered us to develop our own protocols that are used today to treat our children. The visual impairment assessment protocol, for example, was developed by our team and published in the Journal of the American Association of Pediatrics (JAAPOS) in 2016 with the intent of sharing with the world what we have learned so far about the visual aspect of CZS. In addition, the FAV has been a hive for other professionals from other states in Brazil and from the US to visit and to be trained for CZS habilitation treatment.

TM: You work closely with the families of babies affected by Congenital Zika syndrome, and you mention in your Talk that you consider mothers and caregivers to be your best allies in the treatment of their children. When a family is empowered to be involved in treatment, what sorts of positive results do you see?

CV: I truly believe that families make a difference in the child’s outcome not only for children with Zika, but for every child that needs close assistance. In 2016, we realized just how slow the response to our early intervention therapy was—children were coming once every week to the FAV Rehab Center, and we had to think of different strategies since we could not provide as many assessments as we would have liked due to Brazil’s economic and financial situation. We basically had to work with what he had. Despite teaching mothers/caregivers how to stimulate their child at home, we knew they weren’t able to purchase the toys or equipment that were necessary to do so. We then came up with the idea of handcrafting a multi-sensory kit with the mothers/caregivers. They have been using the multi-sensory kit since then and we have filmed a tutorial of how to use the kit and uploaded the series to YouTube so other families can learn and benefit from this idea as well. Here are our tutorials divided into parts 1, 2, and 3. We also provided mothers/caregivers with constant workshops to empower them because we know now that committed parents/caregivers can change a child’s overall outcome.

TM: What was the TEDMED experience like for you?

CV: Absolutely surreal! It was the most thrilling, exciting, scary, nerve-wracking, and challenging experience I ever lived. Having to memorize my 15-minute talk in English and deliver it with emotion with all the tension that was going on inside me was not easy. But after succeeding and looking back at the entire preparation process, I can only thank the amazing professionals I got the chance to work with since day one. I appreciate the sweetness and patience of Lucy Barry, the great suggestions from the straight-to-the-point Marcus Webb, and the amazing support I received from Shirley Bergin. I could not ask for a better team! And if I can add, now that I have stepped in the TEDMED shoes, I value even more each and every speaker that gets on stage to share their personal and/or professional experience – we all have walked an extra mile! Thank you TEDMED for such an amazing experience!