Tom: the inspiration behind PGG

My nephew Tom was 8 months old and still in hospital when the Instituto Pequenos Grandes Guerreiros (“Little Big Warriors”) was founded in March 2016. Tom and his twin brother Daniel were born prematurely at 32 weeks, and when Daniel was discharged 20 days later we thought it was a just a matter of time before Tom joined his brother at home. Unfortunately, taking us completely by surprise because we had never heard about it before, Tom got necrotizing enterocolitis when he was 25 days old.

PGG came about because we realized that, if dealing with the disease was a tough challenge for a close and resourceful family, it is probably close to unbearable for those without strong family ties, access to psychological care and lacking proper treatment and information. Seeing my nephew sick, my sister and my parents under huge stress, put such a strain on me that I wanted to be able to help babies and all the members of their families.

The support I gathered as the project got off the ground was overwhelming and drove me on when Tom passed away at 10 months old. I was introduced to a lot of people who excelled in different areas and who shared my vision of an efficient and transparent organisation that could bring about and sustain change. PGG’s board includes senior executives working in financial markets, the director of an award-winning NGO, mothers of babies who died of NEC, and we have a famous ambassador, Isabella Fiorentino, who has first-hand experience of what it is like to be a NICU mum. Isabella is a TV presenter, former international model and the mother of triplets who were born extremely prematurely.

We knew from the start that if we wanted to make a difference, engage people and change awareness and treatment of NEC in Brazil, we needed to know the size of the problem. Since there was no source of incidence numbers, we decided to be that source and shortly after PGG was formally recognized we added to our board Dr Celso Rebello, a renowned neonatologist and the instigator of our project to map out NEC incidence data in NICUs around the country.

The Brazilian Health Ministry takes very seriously the task of reducing infant mortality, but in a country of continental dimensions with universal healthcare available to over 200 million people this is a gigantic challenge. The Ministry has devised a strategy to reduce infant and maternal mortality called the ‘Rede Cegonha’ (the ‘Stork Network’) programme, which was launched in 2011. It comprises a set of policies focusing on four components – pre-natal care, childbirth care, post-childbirth care and logistics system development – and is gradually being implemented across Brazil in partnership with states and municipalities. The pre-natal care component aims to establish, among others, the risk of a premature birth so that mothers can be referred to the nearest specialized hospital, which can be a considerable distance from the mother’s hometown.

According to data from the Neonatology Department of the Brazilian Paediatric Society, 900 premature babies are born every day in Brazil and there is a deficit of 3,305 NICU beds for them.

Our two arms

Once it was decided that PGG would map out NEC incidence in Brazil, we put together a project to carefully gather data. The pilot phase was launched in July 2017 with the participation of 9 NICUs and it ended in February 2018. A questionnaire was accessed electronically and the answers are currently being analysed by a team of academics in preparation for a national survey. We plan to launch this at the National Neonatology Congress in September 2018, an event which has the participation of over 2,000 neonatologists. We plan to reach at least 70% of Brazil’s 700+ neonatal units within the next 5 years. This will help build a valuable database which will be available to doctors, researchers and public officials, and will also help to inform public policy and efforts to raise awareness. Information we collect on the disease can also contribute to international efforts to understand and prevent NEC.

While one arm of PGG is geared towards assisting the medical community the other provides free, specialized psychological assistance to family members of babies affected by NEC. We have nine professional psychologists who volunteer their time to assist different cases of families with babies in different stages, addressing loss, the challenge of having a hospitalized baby, the uncertainty of the future and adapting to a new reality. They have had workshops with NICU doctors and nurses, they have visited NICUs, and the training is on-going, with team meetings once a month.

In September 2017, PGG gained authorization from the Federal Psychology Council to provide remote assistance, via electronic means, so it is a truly nation-wide organization.

Our supporters

We make the best out of the appeal that social media has among Brazilians to spread our message, and many of our supporters are people who followed Tom’s story when he was alive. His mum kept a blog about his fight and life in hospital, which drew a lot of sympathy, and when his other aunt tweeted an appeal using a picture of Tom wearing a football jersey the appeal went viral. Several high-profile footballers re-tweeted it and posted on social media. People were touched that an organization had been set up to help not just our Tom but all babies in his situation.

Soon after its creation, PGG was selected to be part of a Facebook pilot programme to ‘accelerate’ charities on social media, and the key issue is to make sure that all our followers understand what we do and why. We post a mix of information which appeals to all our publics: parents of affected babies, health care workers and the population in general, especially those of reproductive age. We make sure that it is understood that anyone could have a baby affected by NEC, so it is better to join forces and work towards awareness before it happens to someone you love. We do not get government grants and survive solely on donations.

The future

We believe we can reduce the burden on the Brazilian healthcare system by sharing and multiplying information on best practices to prevent, diagnose and treat NEC. It is of utmost importance for us to work closely and liaise with international organizations, which is why I attended SIGNEC’s 2017 conference and have developed a close partnership with SIGNEC and the NEC Society. Working together, we organized the first International NEC Awareness Day on 17th May 2018, which aims to raise awareness of the disease and of the need to prevent it striking babies whether they are big little warriors in Brazil or born thousands of miles from here. I think Tom would be proud.

For more information on PGG and their vital work, please visit their website and Facebook page.

Previous blogs

Fighting the phantom menace of necrotizing enterocolitis

David J. Hackam, MD, PhD
Chief of Pediatric Surgery and Surgeon-in-Chief
Johns Hopkins Children’s Center

The NEC Biorepository

Misty Good, MD, MS
Assistant Professor of Pediatrics
St Louis Children’s Hospital