Consider this: a great friend of yours returns from a mysterious trip. She excitedly wants to tell you about it - the location, the traditions, the interesting language, the captivating personal biographies of those she met in this new place. But as she starts to explain, you have trouble grasping what she is telling you for it is so different than anything you know of already. You try to compare this mystery place to others you’ve visited or seen, but she tells you nothing is quite on the mark. You attempt to relate her people to people you’ve encountered - and and somehow you just can’t imagine what they are like. How do you find a way to understand this mystery place with its mystery people - so unlike what you are accustomed to nor anything you could ever imagine. How do you understand what your friend is telling you when you can barely imagine the landscape of this place she is describing?

Now, imagine you are the friend whose journey was so different. Imagine that you are the one trying so hard to explain where you have been. Imagine that you are the parent of a premature baby trying to dispel misconceptions, to educate and to bring others in to your experience. You are not alone in this struggle - many preemie parents face this challenge regularly. From the time your pregnancy goes awry you are faced with different sorts of dilemmas regarding how to interface with the rest of the world. The ways in which others respond to you and your child will influence how you choose to relate to them in the future.

Who to Tell?

While most parents initially tell most friends, co-workers and family members their baby arrived early (usually out of necessity), most hold back on sharing all the details and updates with everyone. Instead, they often choose a few close people to share their baby’s everyday NICU struggle. At a time when parents are overwhelmed and confused, frightened and unsure, they may not be prepared to contend with the questions, worries and opinions of others. Many parents purposefully limit the amount of information given to those outside of this “private circle”, or ask the “circle” to act as relayers of information on their behalf. Reasons for this vary from a desire for privacy, to exhaustion in discussing difficult details over and over again. For other parents it was frustrating hearing constant misperceptions of preemies and trying to correct them on a daily basis in an already difficult situation.

“As Michael got worse, I just could not bring myself to talk about it anymore.” Jennifer

“Almost everyone was excluded...I decided to restrict information because people HAD NO CLUE. Someone made the comment ‘Is the baby deformed?’ My daughter wasn’t a freak...she was just premature.” - Shirley

“I couldn’t sort through my own emotional turmoil to effectively narrate the experience to others..” - Jan

Teaching Others about Your Child

In the early days, many times parents ache for people to tell about their child’s daily update- the ups, downs, good and bad. It can be difficult for parents to find the “perfect listener” - one who readily understands the medical jargon, one who can comprehend the severity of the situation, react appropriately and appreciate small bits of progress. Sometimes parents need words of encouragement, but other times they want a listener who will acknowledge the situation, without feeling the need to “fix” it with words.

“As things became worse, we talked to people who were good listeners, who were serious and understood the dangers vs. those who are like “oh, don’t worry”. We needed to speak to people who could help us deal with that issue vs. those who thought we needed a pep talk.” - Jennifer