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

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