WHAT'S THE POINT - A mother's voice

After so many stories found and told as a journalist in the past decade (and more) of my life, I have never thought I will have the most important story to tell as a mother. We have been given this voice and I feel the need to use it.

Thanks to colleagues in Slovenia, we got a space to raise awareness in their daily newspaper časnik Večer.

Indirectly, in the context of a breakdown of Slovenian Paediatric Cardiology, this is also a story about how a Children Cardiac Center should work and how it works where the state and healthcare officials really care about children.
(excerpt from the article)

We are forever grateful to our daughter's team at Childrens' Cardiac Center in Bratislava, Slovakia and we truly hope that Slovenia and their University Hospital in Ljubljana will put their act together and build a sustainable team for the little heart heroes.

As we said in our interview for another Slovenian news outlet - 24ur.com - we adults have to fight for the little ones to get the best possible care, so they can fight the odds from the best possible starting point.

'Naša realnost je, da Emanuela živi izposojen čas' - 24ur.com

Not many people get to spend months in the hospital. After our daughter was born, the Children Cardiac Center in Bratislava, Slovakia became our home for seven months. Not many people get to spend so much time with the same doctors and nurses. After a while, it becomes personal. Developing relationships, good and bad, is inevitable. As is seeing them all on their good, as well as bad days. And if you are like me, the healthcare professionals don't have it easy either.

Slovak daily newspaper Nový čas helped us when our Emanuela needed blood. We are grateful to every donor that answered their call. The second article, however, was to praise the cardiac leadership, and to raise our voice about everything that could be done better at the paediatric gastroenterology ward. Reading the article as a journalist myself, I think the author did not succeed fully capturing our message. I want to make it right.

No mother should run between floors of the hospital, looking for a doctor specialist outside the cardiac care, as I did when we needed gastro- consult about Emanuela vomiting and rejecting food. No parent should take a tube-fed child home with boxes of non matching and / or missing feeding tubes and add-ons needed for a feed, as we did. No child should be left to a mother's instinct to be taught how to eat, as our daughter was. No nurse should ever brush off a mother sharing information about her baby's destroyed vessels and suggesting a different approach to insert a cannula or take the blood, as I was. No country should have such poor interdisciplinary cooperation and professional exchange like we saw it in Slovakia. And no country should lack proper medical care for children's hearts like Slovenia does.

That is our experience. It is subjective. But I will not give up raising my voice for children when and where they need it.

I will be Emanuela's voice until she finds her own. And I truly hope she will embrace her story, write it in her own way and continue telling it. Because, everyone's story can be someone's survival guide.