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Reflections from a Preemie Parent

A year of learning and writing about Neonatal Follow Up Clinics as the parent of a premature baby

By Melissa Jones

It’s a scene familiar to many preemie parents: standing off to the side in a small room at your son or daughter’s Neonatal Follow-Up appointment, watching hospital staff work their way through a battery of tests of them - manipulating objects, kicking a ball, answering questions, solving problems. Of all of the tests that your preemie has gone through in their short life, this set feels very innocuous: non-invasive, painless, and play-based testing makes this appointment - on the surface, at least - seem almost like a play-date.

And yet, there’s a level of stress and worry to these routine Neonatal Follow-Up appointments that many parents feel. Having attended the Follow-Up Clinic myself with my son, Elliott, I remember always feeling surprisingly anxious ahead of attending the Clinic for these meetings.

I recall feeling particularly anxious about the possibility that Elliott would not perform well on the tests and what a result outside the normal range might mean for him and his future, as well as the impact it might have on our family. If he has a language delay, what will this look like when it comes to school, to his future career prospects? If he has a cognitive delay, will he still be able to attend a mainstream school, will he be able to be independent? I came to every appointment with a sense of wide-ranging foreboding, desperately hoping that the test results showed that Elliott was on meeting and on track to meet all of his milestones. Anything less felt like an insurmountable deficiency.

But, do these test results really demonstrate the bright, colourful mosaic of talents, charm, and exceptionality that can make up a premature child’s present and future? Can how well a child identify and match objects predict the unbounding joy of their being and the essential place they hold in their families?

The answer, of course, is an emphatic NO.

I’ve been so grateful to have been working over the last year with the Canadian Premature Babies Foundation (CPBF), diving into the wonderful research being done through the Canadian Neonatal Follow-Up Network (CNFUN) in collaboration with CHILD-BRIGHT. CNFUN created the Parents’ Voices Project specifically to address the focus on deficit-based evaluations of children born prematurely in Follow-Up Clinics and help synthesize the parent perspective on how they view their children and their development, as well as what identify what information may be helpful to provide parents as their children grow.

Over the course of three blogs, I wrote about the Parents’ Voices Project’s goal of moving Neonatal Follow Up Clinic appointments from deficit-focused testing to a more fulsome, strengths-based approach to evaluating children born prematurely as they grow and develop.

My first blog discussed the ground-breaking study CNFUN released, “Parental perspective on important health outcomes of extremely preterm infants”, which showed that for the overwhelming majority of families the overall well-being of their child was more important than identifying and evaluating the severity of any delays or disabilities through the Follow-Up Clinic.

My second blog was an interview with the Parents’ Voices Project’s parent partner, Rebecca Pearce, who discussed how integral her perspective was to creating the vision for the project and how important it was to be a co-investigator on the projects’ research studies. Rebecca, the mother of preemie twin girls, also used her lived expertise to help interpret and present the results of the studies, providing very valuable insights around the limits of deficit-focused research and how it does not adequately prepare preemie parents for what life looks like outside of the NICU. It was so reaffirming to speak to another preemie mom about the gap between our hopes and dreams for our tiny babies and the sometimes negative way they are viewed by the healthcare system.

Finally, I was able to share a preview of the forthcoming second study from the Parents’ Voices Project team, which looked at evaluating how preemie parents interpret certain development delays and health issues in their children, ranking the various possible outcomes from most to least serious. In addition to providing more support for the findings of the first study, which showed that preemie parents were eager for Follow-Up Clinics to move to a strengths-based evaluation of their children, the study also showed which disabilities parents would be most concerned about in their children and so would benefit from receiving more information about during their stay in the NICU and in subsequent clinic appointments. Looking ahead, it’s no surprise that the Parents’ Voices Project will continue to explore the theme of communication in the NICU - stay tuned for a future blog on the topic!

As a preemie parent myself, it’s been such a gratifying experience diving into the incredible work being done by the Parents’ Voices Team and CNFUN. I saw so much of myself and my son Elliott’s experiences in their work, and I felt so grateful that partnership with parents stands at the centre of the project. It’s exciting to think ahead to what changes this might inspire in future Follow-Up Clinics for other families like mine and other little boys like Elliott, who despite any lingering effects from his premature birth and his time in the NICU, is a vibrant, joyful light in my life and the lives of his family and friends.

Melissa Jones is the parent of two preemies, as well as a public speaker, fundraiser, and a guest blogger at CPBF.

For more information:

Canadian Premature Babies Foundation

Mère de deux enfants prématurés, Melissa Jones est aussi conférencière, agente de financement et blogueuse invitée à la FBPC.

Pour en savoir plus :

Fondation pour bébés prématurés canadiens

The Parents’ Voices Project is supported by the CHILD- BRIGHT Network, under Canada’s Strategy for Patient-Oriented Research (SPOR) initiative.

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