What makes us parents special advocates!

This blog was written by the founding members of XXS – Associação Portuguesa de Apoio ao Bebé Prematuro  

We, parent groups all around the world, are the most authentic advocates for the Every Newborn Action Plan.

With first-hand experience, we are the experts in day-to-day care for our newborns and preterm infants. If a baby is born premature, sick or dies that might cause an impact in the parents and their families’ lives which can change them forever. If they become active to fight for the cause of our babies and our families, they have unique experiences and put their heart and soul into it.

We, parents, and our children are the faces and stories to facts and numbers. This is why we can powerfully complement the work of health professionals and policy makers. Parent groups also lay the groundwork for change in their local community. Through continuous work in hospitals, with politicians and local multipliers we also gain respect and awareness for our organisations and for the problem of preterm birth.

Even more can be achieved when parent organisations work together on a national and international level. A good example from Europe is the work of national parent organisations that have collaborated together with the European Foundation for the Care of Newborn Infants (EFCNI). In joint projects, parent organisations from all over the continent have unified their voices to improve the situation for preterm and sick newborn children and their families. World Prematurity Day each November 17th has been a unique opportunity to connect with and advocate for change. Parent organizations have also been working to improve the standards of care for preterm and sick babies.Our organisation XXS – Associação Portuguesa de Apoio ao Bebé Prematuro – was started 6 years ago in Portugal. We were a small group of parents, who went through rough times with our own preterm babies. We experienced many things we desperately wanted to change, so we took matters in our hands and started to fight.

Working together with EFCNI and other parent organisations helped to strengthen our voice. One important step in that process was collaborating on World Prematurity Day activities. Year after year XXS became more popular and last year we could win internationally renowned soccer player Cristiano Ronaldo and fado singer Mariza to raise their voices on behalf of our organization for preterm babies. In March 2014, we celebrated a great milestone in improving neonatal healthcare with the launching of the C.A.R.E. project together with our national government. The project includes prevention campaigns, information and awareness for preterm birth, training courses to skill development, improvement of accommodation for parents in Neonatal Intensive Care Units (NICUs), and pilot projects thatfocus on developmentally supportive care. 

Going forward we plan to further our own work on the C.A.R.E. project while also helping to implement the Every Newborn Action Plan and continue our involvement as part of EFCNI. We will also focus on the creation of parent groups in different hospitals in Portugal. We see this as an important way to support, inform and develop the power of parents and communities, one of the strategic objectives of the Every Newborn plan.

Since our creation we have learned that what starts small can have a huge impact with hard work, ambition and the will to make a change. Parents are critical in that process and they and their families will continue to inspire and drive that work.

About XXS:
XXS – Associação Portuguesa de Apoio ao Bebé Prematuro (XXS) is a Portuguese nonprofit association founded in 2008. XXS was created by a group of parents who lived the experience of prematurity in the first person and adopted a mission to help premature babies and their families overcome those who may be the most difficult times of their lives!

All we, the founders, are volunteers and we all have different professional backgrounds, we are managers, architects, journalists, IT professionals, health care professionals. However, we have one thing in common: all of us lived the experience of premature child birth in 1st person, we all are parents of premature babies born between 23 and 35 weeks gestation or are even ex-premature babies ourselves!  


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