Bronchopulmonary Dysplasia (BPD) is a chronic condition which results from damage to an infants lungs, usually caused by mechanical ventilation and long-term use of oxygen. Over inflation of the alveoli can lead to inflammation causing damage to the tissues of the airway, the alveoli sacs and the surrounding blood vessels.
The disease is more severe if more alveoli and blood vessels are damaged.
These breathing treatments are life saving and common place in the NICU, but can lead to long term damage. Some infants experience symptoms such as laboured breathing, prolonged need for oxygen, more lung infections, and feeding difficulties.
Children and adults with a history of BPD who continue to have or develop respiratory symptoms are often labelled as asthmatic. However, a 2019 paper published in the Respiratory Research journal found that the lung function impairment and quality of life survey results for adults with a history of BPD differed from that of asthmatics highlighting the need for objective assessment of lung health. Click here to view our summay and a link to read the paper.
The America Lung Association have created an online resource discussing BPD and also has advice for parents on how they can discuss BPD with clinicians.
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.
Elf’s are often linked to the Christmas/Festive period but this time we are referring to the European Lung Foundation. They have collected together resources relating to the health and diseases effecting the lungs of infants/children born preterm. These pages can be viewed is different languages increasing accessibility.
A team at the University of Melbourne in Australia have discussed new research which shows a link between premature birth and obstructive lung disease after the age of 50, they also highlight opportunities for reducing risk factors such as smoking in people born preterm.
This page has further information about COPD (chronic obstructive pulmonary disease), intrauterine lung development and the importance of health promotions for those born early.
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.