advocacy Archives - Adult Preemie Advocacy Network

Welcome back!

If you are here reading, I hope that you enjoyed my first post! I will do my best to answer questions that come up along the way. Thank you for participating.

As I mentioned last time, research shows us that some people born preterm experience certain conditions more often than people born full-term. That is what being at “risk” for something means. It does not mean that everyone born preterm will develop the condition, but it does mean that the changes to the body that occurred when someone was born preterm, may make us more susceptible. We do not fully understand the mechanisms or ways those body changes contribute to risk – but we are working on figuring it out.

Luckily, most of the conditions are ones that other people experience too, for example, hypertension (high blood pressure), diabetes, kidney disease, and anxiety. People born preterm might experience them earlier, or with slightly different symptoms. Because the conditions are so common, very often the connection with prematurity is missed and that can frustrate the person born preterm and their families.

So, what do we do about that?

One of the things my colleagues and I did was to write some recommendations for clinicians that we hope will help them understand what the research is showing, and provide some ways to help lessen or mitigate those risks. Knowing about these recommendations, specifically, the things we can do to help lessen the risks is important for people born preterm, their families and the healthcare team.

Inform your healthcare team that you were born preterm, and if that does not seem to impress them, share this research summary and recommendations.
Make sure to get your blood pressure checked every year, if it is high or trending up, discuss ways to manage blood pressure with your healthcare team.
Avoid smoking, second-hand smoke and environmental smoke.
Try to do some physical activity every day.
Discuss with your healthcare team regular screens for diabetes, kidney disease and obesity.

These points to consider seem basic, but they are an important start. Remember, preterm birth can be a risk for very common things, some of which can be affected by doing some basic things.

Today’s post discussed physical health, we will talk about mental and behavioural health, as well as school performance in a future post!

Please remember, this is not meant as medical advice. You and your healthcare team know your individual history. Do not stop or start any treatments without discussing it with your healthcare team.

Thank you for reading, Michelle

Michelle M Kelly, PhD, CRNP, CNE, FAANP Associate Professor, Villanova University

2 Year Anniversary

Over the last two years we have grown from conversations between friends to a large network having the opportunities to influence international groups and research!

We are offering peer support through our closed Facebook group and via email to ensure everyone has a chance to share their story. We want to open discussions around sharing adult preemies experiences on the website and in public forums as quotes (which can be anonymous), please get in touch.

We are continually adding to our resources, such as collating research papers with added plain English summaries, posting about research opportunities, and creating blog posts.

We are creating a Glossary page and are always finding new words to add!

This map shows our global reach over the last two years; individuals from 49 countries and counting have visited our website.

We are working on projects to help raise awareness of the life-long impacts of prematurity across the globe. We have projects in the pipe-line including educational resources for clinicians and we want to grow our community.

We are grateful for all of the support we have had over the past two years and are excited for what the future will bring.
Lauren & Juliette APAN co-founders January 2023

Why Adult Preemies?

We’re sure the first question you asked yourself as you stumbled on this site was “why adult preemies?” You may have even asked yourself “don’t they already have groups for that?” The short answer is no they do not. There are many groups that focus on premature babies and support for parents. But there really isn’t much out there for those of us born preterm. Especially since the field of neonatology has dramatically evolved over the last 40 years.

Preemies born today receive the benefit of the improved care that was developed as neonatology advanced. But many of us older preemies feel we were left behind as the focus remained on the “newer generation.” Many of us are incredibly lucky and have fulfilling lives with little negative impact by our early birth. There are also many of us who have struggled in school or with work or social relationships. We even know of many of us that had health conditions that seemed to have disappeared out of our medical records! This causes us to struggle to obtain treatment for these conditions as the medical community still erroneously believes that “preemies catch up by 2.” We’re also not often eligible for the same services and support babies today receive mostly due to the fact those programs were created long after our birth. For example in the United States preemies are eligible for SSI and other services if they meet the eligibility requirements but that law was not implemented until the year 2001!

What is a preemie?

Premature (or preterm) birth is a live birth that occurs before 37 completed weeks of pregnancy. Currently around 15 million babies are born preterm annually worldwide, however there is not much known regarding long term outcomes of NICU graduates. This is primarily due to lack of research and difficulty connecting former preemies with current research professionals. It can seem impossible to advocate for yourself when there aren’t any resources to turn to. We hope to change that with this group! You don’t have to feel alone anymore. If you are an adult preemie you are welcome in this space to speak freely and have your voice heard!

However, it is important to recognize that neonatology is still a fairly new field and research and is highly needed for outcomes of premature infants. Especially long term outcomes. There are very few studies across the globe that address these topics. There simply hasn’t been enough opportunity for further research as the focus seems to remain on today’s preterm and the parents of those younger preemies. Our long term goal is to develop a place where other adult preemies can reach out to neonatologists or other professionals who are involved in research of preterm infants, specifically related to long term outcomes. Ideally, eventually, we would like to connect former preemies with professionals if they have questions or would like to participate in further research studies. Preemies have a unique bond to each other that we discovered is very unique to us and we want every preemie to have that connection. Many of us feel misunderstood by even those closest to us but that divide disappears when we connect to other preterm born adults.

In later blog posts we’ll delve more into the topic. We have many ideas and this website will be evolving as our ideas come to fruition and we develop our plans.

Were you a preemie? Tell us your story in the comments below.