The shining lights of Hollywood

In this blog post we want to have a little look at how premature birth is portrayed on our TV screens. Films, TV and social media are things many of us consume on a daily basis and can have a significant influence on us. If premature birth is being misrepresented then this could form unrealistic expectations for the public and soon to be parents of what premature birth and NICU care look like. 

Many years ago in an EastEnders episode from 2017, Abi gives birth to her baby at 28 weeks gestation whilst she is in a coma. In the operating theatre, the infant is handed straight to dad and seems to suddenly be a 6lb newborn baby. I know from my own birth records and experiences that this would not have been safe for the infant, this error has also been commented on by the general public. Furthermore, in a January 2022 episode of EastEnders, we see Chelsea give birth at just 24 weeks. This storyline involved premature rupture of the membranes (PROM) which is a common reason for premature birth and a high-risk neonatal journey. However, there has been much talk on social media and in the papers about how fake the infant used for filming looks. We will all appreciate that a real newborn 24 week infant cannot be used in filming, but it feels that the prop department may not have done their research thoroughly enough. They have now completed multiple premature birth stories and still seem to not be getting it quite right. 

Over the years we have seen many complex birth and premature birth story-lines throughout the very popular Call the Midwife series. This show does pay close attention to its props, medical jargon and clever camera angles to create a very immersive hour. However, the stories lines portray the care given to families and infants in the 1950s and 60s, so some views and treatment options are historical rather than modern and therefore can’t give us a clear picture of modern healthcare.

Every premature birth is different, we can definitely be sure of that, but we want to share our journeys to give some real-life examples. Take a look at our About Us page to learn a bit more and get in touch on our Contact Us page to share your story.

Thank you for reading

Juliette APAN Co-founder

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.  

  1. Inform your healthcare team that you were born preterm, and if that does not seem to impress them, share this research summary and recommendations. 
  2. 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. 
  3. Avoid smoking, second-hand smoke and environmental smoke. 
  4. Try to do some physical activity every day. 
  5. 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

Validation and Reality

We have been seeing a lot of questions wondering if other adults born preterm are:

1) experiencing certain health conditions

2) if they are related to being born early, and

3) what to do about it.

The short answers are: 

  1. Yes, research suggests that people born preterm experience some health conditions more often than people born full-term. 
  2. Yes, being born early likely contributes to that risk – but science is still working on the how – and risk does not mean it will happen. 
  3. Talk about it to your healthcare team – primary care, speciality care, doctors, nurses, and therapists.  

If you are only looking for some validation, you can stop reading at this point. Otherwise, the remainder of this post will provide some background and explanations. Future posts will address some of the risks individually.

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. 

First some reality. You all are the first generations of people born preterm who represent a wide range of gestational ages, AND who are living and thriving into adulthood in significant numbers. Sure, we all have heard stories of someone born in the 1920s or 30s who were preterm and survived. But for many of those survivors, early meant being born around 34 weeks without significant respiratory compromise.  The point is that we did not have large numbers of preterm birth survivors reaching adulthood 25 or 30 years ago, so the science and the research available is evolving. Researchers and clinicians need to hear your stories and learn from you. (Maybe a brief history of neonatology will be the subject of a future post). 

The second bit of reality is that we have some work to do to convince members of the healthcare team who have been practising for the last 25 years that preterm birth history matters outside of the NICU. I say this as a nurse practitioner who was educated in the late 1990s and who was taught all the traditional myths.  NICU issues stay in the NICU, babies catch up by age 2, and the ones who cannot catch up will be obvious long before age 2. That means for kids who were doing well by elementary (primary) school age, we stopped talking about their being born early, and we told parents they did not have to mention it anymore. However, research over the last 10 years or so is telling us that children born preterm may start to struggle in middle (secondary) school as math or reading becomes more complex. And that some adolescents born preterm have early onset of typical “adult” conditions like high blood pressure, kidney disease, and diabetes. Unfortunately, it can take many years for research to change practice. That means that even if the researchers suspect something, the healthcare team may not use that information to change their practice right away. 

These 2 realities combine to cause a lot of frustration on the part of the person born preterm, their families and their healthcare team. In the next few posts, I will discuss some ways that we can work together to educate ourselves and our healthcare team about how to promote health and reduce risks associated with preterm birth. 

Thank you for reading, Michelle

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

Bronchopulmonary Dysplasia

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.

Click here to view their website.

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

Lung health

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.

Click here to read the full article. Published February 2022

Click here to read their paper on long term control of Asthma

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.