The Baby Boy Behind Brazil’s Instituto Pequenos Grandes Guerreiros

Written by Tom’s mama, Bia Rosito

Antonio Rosito Robyn, our Tom, was born on a cool winter’s day on July 10th, in São Paulo- Brazil. Tom and his twin brother Daniel were born prematurely, after 32 weeks of gestation. Although small, both boys were born healthy. IMG_7384.JPG

The first days in the NICU were some of the most emotional in our lives. The boys learned to breathe on their own, and were on intense lessons of breastfeeding and maintaining their body temperature. After 20 days, Daniel had gained enough weight to be sent home. Tom still had a ways to go.

All we could think about was having both boys healthy at home – but on August 4th, 24 days after being born, something happened that would ultimately change our lives forever.

At six AM we received a call from the NICU, the doctor told us Tom was heading to surgery. He had developed necrotizing enterocolitis (NEC), a disease we had never heard of.

Tom went in for his first surgery, which five hours. He went into cardiac arrest during the procedure, but pulled through. Tom lost almost half of his small intestines. Our baby came back from surgery intubated, heavily sedated and with an enterostomy.

Little did we know, he would go on to have another seven surgical procedures, and be left with only 12 centimeters of small intestine and without an ICV (ileocecal valve). Tom was TPN dependent and was eventualy moved from the NICU to the PICU. We had little information of the prognosis, and had to do intense research about his condition.

IMG_1063We eventualy decided to have him transferred to a hospital with a medical team specialized in intestinal rehabilitation. The thing we most wanted in the world was to bring our baby home. He was doing well with this new team, gaining weight and hitting his milestones.

Tom was a happy baby, who loved to watch cartoons and read books. Oh, how he loved books… he loved looking at bright pictures, or listening to different stories. Another passion of his were balloons. Especially red ones. We always made sure to have a balloon in his hospital room.

As time went by, we started to get to know other families who had been affected by NEC. Brazil is not a country known for its health care, so we came across stories of babies who were malnourished because of bad TPN, and mothers who had to leave everything behind to get better care for their babies who were affected by NEC. It was then that we realized how lucky we were to be able to provide Tom with the best healthcare available in the country.

Simone, one of Tom’s three aunts, created an institute to offer psychological support to families whose lives had been affected by NEC – and so, Instituto Pequenos Grandes Guerreiros (Little Big Warriors Institute) was born. Initially, free psychological support and research was the organization’s main goals.

In the meantime, we were being trained in the hospital to takeover Tom’s care and finally bring him home. Things were looking up. And then, they suddenly weren’t. It started with a fever, then difficulty breathing, and suddenly Tom had gone into septic shock. He was put on a high frequency ventilator, and slowly, his organs started failing.
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After a 21 day battle in the ICU, Tom passed away on May 21, 2016 at 10 months and 11 days. The worst day of our lives. His memory is kept alive daily, through his twin brother, the pictures of his beautiful smile, the sound of his laugh echoing in our minds, and through the work of the Instituto Pequenos Grandes Guerreiros.

Tom lived a short life – but what a great life it was. He taught us lessons that could only have been taught by the wisest of people. Tom showed us love in the most intense manner possible. And for that, we celebrate him. Always. Viva o Tom!

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