Guest Post: Constipation in Preemies – A Poopy Experience

The following is a guest post from a lovely mother named Megan about constipation in preemies:

Warning: this post is about poop.

Did you know that former preemies often have chronic severe constipation?  I didn’t.  Not until I met a preemie parent who mentioned her son’s struggles.

I never thought I’d be the kind of parent who wanted to talk about her child’s poop (Number? Consistency?  Gross…) but here I am.  Why?  Because constipation is a preemie thing and I didn’t know and no one told me and I’ve been feeling terrible while my baby cried on the potty for two years.

Megan holds her daughter for the first time.
Megan holds her daughter for the first time.

When my daughter was born at 27 weeks and 5 days, I didn’t know that babies born that early could even survive.  Not once in my “complicated” pregnancy did anyone mention prematurity, never mind how common it is.  Even after I’d spent a week on hospital bed rest my OB blithely left for vacation saying she knew I’d be there when she returned.  Not so much.  Despite doing everything to keep baby in, I became the parent of a micro-preemie and pretty much forgot how to breathe.

I threw myself into the challenges of preemie parenting, anticipating the problems my baby would face and how we could be a part of her team.  I practically lived at the hospital, grilled anyone who wandered too close, and strove to “do everything right.”  This helped to keep me sane until we were discharged from Mount Sinai.  All at once we’d fallen into an information vacuum.  Instead of a ward full of nurses, doctors, RTs, and LCs willing to answer my questions on IVH, IVL, PDA, CPAP, and more acronyms than I could have imagined, there was instead an echoing silence and the sure knowledge that I was doing everything wrong.

I’m a quick study and pretty good at navigating the system.  The problem is that the system doesn’t offer much after discharge from hospital and even less after babies are discharged from follow-up clinics.  The medical technology that keeps these tiny babies alive is relatively new, so there’s a shortage of evidence-based research on preemie outcomes past the stage when neonatologists cut them loose.  As a result, we are left to the well-meaning but ill-advised advice of friends and family and feel like a failure when we can’t  make things okay for our children.

This brings me back to poop.  Apparently constipation is “a preemie thing.”  All my attempts to help by eliminating dairy, adding fibre, more water, etc., were doomed to failure ’cause “it’s a preemie thing.”  Why wasn’t this mentioned while we were in the hospital?  Why didn’t this come out at any of my daughter’s innumerable follow-up appointments?  And if this is a preemie thing, how many other things are “preemie things?”  How many children are falling through the cracks and are in pain, or missing the opportunity for early intervention?  How many parents are stressed to the breaking point by mystery symptoms that no one told them to watch out for?  How many are suffering alone due to guilt and a lack of information?

I suspect lots.  Through extensive Googling, I’ve found that there is a long list of things to which preemies are more disposed simply by virtue of being preemies  Some of these things are mild, some aren’t, and it would have been more than helpful to know.

So…  Here’s a non-comprehensive list cribbed from thepreemieexperiment.blogspot.ca:

  • anxiety disorders
  • sensory integration issues
  • psychiatric issues
  • behavior issues
  • fine motor delays
  • fatigue
  • feeding issues
  • weight and growth issues
  • reflux issues
  • headaches
  • autism spectrum disorders
  • coordination issues
  • sleep issues
  • severe constipation
Megan's life with her daughter is wonderful
Megan’s life with her daughter is wonderful
Growing up is the best part of living
Growing up is the best part of living
Many parents are told that they are imagining things or that they are at a fault for not doing or giving enough of something, or doing or giving too much.  This needs to stop.  Babies are suffering, parents are suffering and we need to know so that we can help.  So we can stop blaming ourselves and get whatever help is available.  Everyone needs to know so that there are resources available when we need them and it’s not going to happen unless we talk about it.
 
So…my kid has preematurity-related poop issues.  How about yours?
 
Megan