Presentation from The Alexis Foundation Conference
Grieving and Coping After the Premature Birth of Your Baby, Part two

By: Mara Tesler Stein, Psy.D. 
So many times when I talk to parents, I hear a deep sense of bewilderment in their voices, in the questions that they ask. Their puzzlement at first seems to be a reflection of their attempts to find their way around in their new circumstances. After all, when you have a preemie, you are suddenly thrust into this confusing and overwhelming world -- you are disoriented. You are flooded with feelings and drowning in information. As you feel your way about in this unfamiliar and frightening place, your confusion begins to diminish. And yet, if you are still left with a vague (and sometimes, not so vague!) feeling of unease, of something being different about you, you are not alone.

Parents may worry after a year, two years, ten years or twenty, that they have not "gotten over" the traumas and losses of having a premature baby. They may concede that they are more vigilant now. They sometimes find themselves very afraid that something awful will happen to their child. Memories pop up in the most unexpected places. Tears well up without warning. They secretly wonder if they have PTSD or are not moving through the "stages" of grief in the "right" way. They imagine that the premature birth irreparably damaged something in them. In short, they fear that something is terribly wrong with them.

Our appreciation (as a society) for the monumental changes that occur during pregnancy and after childbirth has grown in recent years. Now, instead of primarily encouraging parents to learn about the biological changes that they are going through, we are also talking about the emotional and social transformation that any parent experiences after the birth of a new baby.

Parents who have uncomplicated pregnancies and full-term deliveries have a community of people that they join when they have their babies. More and more, they find the changes that they feel acknowledged and validated. Parents of full-term babies say with a chuckle, "I'll never be the same again" and most other parents know just what they mean.

None of us will ever be the same again -- but a lot of the time, we're not so sure that anybody knows what we mean. Our journey was distinct. Our transformation took a startling path -- perhaps a longer road or one with more twists and turns. We are different now. And the unease we feel, I believe, comes in part from our struggle to figure out who we are now, how we fit in to the world we used to inhabit, and how we want to move forward.

So many times, parents talk about how their babies amaze them. This is regardless of whether your preemie survived -- whether you felt your baby move inside you strongly but then didn't have that chance after delivery; whether you saw your baby struggle with all they had, only to have organs fail; or whether your baby survived to come home and grow up.

"They are so strong," parents say. "They are such survivors, such fighters."

I'll bet that each and every one of you made it through something that would have been unimaginable to you before you survived it. Total bedrest? Magnesium Sulfate? Juggling the needs of older children and unborn ones? Splitting time between competing demands of work, school, home, spouse, and helpless baby in the NICU? Knowing and loving your tiny babies; wishing you could take their place; making unfathomable decisions; truly wishing and hoping while living with not knowing.

Have you given yourself the chance to look back at that time and the time that has passed since then and marvel at yourself? Can you remember who you were before this pregnancy, this child? Take a minute to think about the things that you have learned about yourself. Reflect for a moment on the things that you know now, the things that transformed who you were into the person you are today. I'm certain all of you can detail the steps, small and large, that your preemies took in their own development -- have you given yourself the chance to really appreciate your own metamorphosis?

Some of us feel like walking wounded much of the time. Ever vigilant, we wait for the next shoe to drop, and then the next one and the next one. Others may feel more robust now, but still different than before. It's not just because of being parents to this new baby -- but because of how you got there. You have seen something profoundly different. You know things that you didn't know before, and that many parents out there still don't know.

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