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.