Jane’s Checklist

Read Jane’s advice, from her perspective as a NICU parent and nearly-qualified doctor.

Jane is a trustee of EiSMART. After her experience as a NICU parent, Jane has re-trained as a doctor and, having just completed her final medical school exams, she is now on the home stretch to qualifying! Jane shares her story and words of advice.

My involvement in EiSMART came about after a chance meeting with Dr Betty Hutchon, the Co-Chair of the EiSMART Management Committee, at one of her baby clinics where I was an observer. Every idea she shared with me on early intervention resonated so closely with my own experiences as the mother of a 26+6 weeker who suffered a grade III brain haemorrhage. I wanted to learn more and share the knowledge I had accumulated as a parent carer.

For many years, I informally met with Betty and a small, but amazing and dedicated, group of therapists, parents, and professionals, to discuss our individual experiences of high-risk infants and ideas around early intervention. We then set up a Community Interest Company, EiSMART. Eventually, our individual contributions grew and transformed into the collective framework we now call EiSMART. We each bring our various NICU experiences and clinical skills, but EiSMART’s true richness is born out of the vast array of different skills contributed by every member.

My 26 weeker has just turned 9 years old. During those 9 years, we have both transformed. She has gone from being a critically ill infant with a poor prognosis to a marvellous, energetic young lady starting Year 4. Motivated by my experience as her mother and inspired by the care we received, I took time out from my legal career and re-trained as a doctor. I have completed my final medical school exams and am now on the home stretch to qualifying.

Having spent time in the NICU, both as a parent, and more recently on the other side of the incubator during medical school placements, I wanted to share with you some tips about the first few days and weeks in the NICU. Here are the five things I wish I knew as a parent but didn’t find out until later:

• I don’t know a single parent who expected to find themselves in the NICU. The experience is shocking, scary and like nothing you have ever experienced. People react differently and manage in different ways. Be gentle with yourself! There is no perfect way to do this! Just remember that you are a very important person in your baby’s world, even in the NICU.
• You have a role in the NICU and you are welcome there. Don’t be afraid to make yourself known to the care team looking after your baby. Even if the care team looks busy, they will be happy to help you and explain things to you. You can also tell them how hands-on you want to be or even if you feel afraid, so they can help get you familiar with the NICU environment.
• Your baby needs you! It is easy to feel like you can’t help in the NICU, particularly in the first days or even weeks. It’s not true. You are key to your baby’s care and well-being. Your presence, your voice, your smell, your words, your songs and eventually your touch, your skin-to-skin and your cuddles are all key to your baby’s well-being, happiness, comfort and even their early brain development.
• Pre-term babies communicate in their own way. Their movements and body positions, look and sounds can tell you something about how they are feeling in their environment. The NICU team, particularly the nurses, physiotherapists and occupational therapists can help you learn the language of preterm babies. There are many examples, but the one I found most useful was to use my hands to contain my little one and create a safe, confined space when she was restless or distressed.
• Applying the principles of EiSMART helps. The EiSMART approach is about developing an awareness that S(Sensory), M(Motor), A(Attention and Regulation) and R(Relationships) form part of every interaction and intervention. T(Together), parents, therapists and healthcare professionals can explore and work to understand the lived experience of your baby, to minimise distress or discomfort, and to create an environment that promotes wellbeing.

I wish you well and I hope these tips are helpful.