More Than Just A Snuggle: Kangaroo Care For Twins

more than just a snuggle kangaroo care for twins stephanie ernst writer

Noone expects to have a premature baby. (or in my case, babies). But that’s the situation I found myself in 10 years ago. 2 very ill, pre-term babies in a NICU – and not knowing what the next hour held, let alone the future. This blog is going to be a little emotional to write, because it’s sharing my experience with kangaroo care, and what it meant to me. After all, today is Kangaroo Care Awareness Day,  and I passionately advocate for kangaroo care for multiple births, as my own experience shows that kangaroo care for twins is possible.

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Leave The White Coat At The Door

stephanie ernst leave the white coat

There is a lot of symbolism and respect within the white coat for medical professionals. It’s a symbol of knowledge, of a lot of learning, and carries a lot of esteem and recognition. After all, medical professionals earn the right to wear the white coat, with years of study and field experience to establish their role as an expert.

It is not an easy role nor an easy pathway to reach the role of medical professional, and this should be respected. But along with the respect that the white coat should deserve comes sometimes an unwanted side effect – white coat syndrome.

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Don’t Compare Twins, But Keep The Differences In Mind.

Don’t Compare Twins, But Keep The Differences In Mind Stephanie Ernst writer

I saw an article online that’s gone somewhat viral – a TikTok from a  twin mum urging parents to stop worrying about delayed development in their babies- you can’t even compare twins.   As a parent of twins, I absolutely 100% agree with this sentiment – it’s something we all catch ourselves doing, and it can be stressful.

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Lived vs Learned Experience – The Role of Patients in Research         

lived vs learned experience stephanie ernst writer

I recent wrote an article for Rare Revolution magazine – “Engaging Patients To Shape The Research Of The Future”, explicitly talking about how  the shape of research is changing, with more and more focus now turning to consultation of patient organisations in developing clinical research. 

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Parenting A Rare Disease In The Netherlands.

stephanie ernst writer parenting a rare disease in the netherlands

Parenting is hard. We go through the challenge of falling pregnant, carrying a pregnancy, and then it comes to birth. There are so many choices, so many decisions, and each one makes an impact on our lives. C-section vs vaginal delivery, breastfeeding or bottle-feeding, midwife or obstetrician, homebirth or hospital delivery – the list is endless, and everyone has an opinion on what is best. Parenting a rare disease can be harder.

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What Have You Googled Recently?

stephanie ernst what have you googled

This isn’t a discussion on your search history (so you can all take a breath). Although I’m a big fan of search engines and finding accurate information to help you understand a diagnosis, I also know that a plethora of wrong information is just as accessible.

Patients are often told not to Google things after a discussion with their doctor, and of course, being the humans we are, we will go and do precisely the opposite. (Don’t deny it, we’ve all done it!)

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