Presentation from The Alexis Foundation Conference
Grieving And Coping After The Premature Birth Of Your Baby

By: Deborah L. Davis, Ph.D.
A Different Journey:

For many preemie parents, it is shocking to them how deeply distressed they are by the early birth of their baby or babies. Feelings of sadness, regret, anger, powerlessness, guilt and anxiety can feel overwhelmingly intense. As a result, many parents worry that there is something wrong with them-- particularly if their child survives, and particularly if their child’s health and development is fairly good. When you have so much to be thankful for, why do you feel so bad? Ironically, the better a child does, the more the parents may worry about their inability to cope with the "prematurity thing".

Like many preemie parents, you may yearn for emotional support and information about your painful, confusing and overwhelming experiences of delivering too early and having a baby in the NICU. A key element of support is having your sense of loss validated, and understanding that grief is at the emotional core of this experience. Love and joy and hope are also at the emotional core, but in order to appreciate the positives, it helps to get a handle on the accompanying pain. Just by seeing and accepting the grief, you can begin to figure out how to deal with the wide range and complexity of your feelings. More specifically, it can be helpful and reassuring for you to

  1. Acknowledge that having a preemie can be so hard;
  2. Recognize the specific losses associated with premature birth;
  3. Learn about grief and ways to cope;
  4. See what it takes to come to terms and get on with life.

The most pressing concern for many parents is relevant to this last point: "How can I come to terms with my child’s premature birth? How can I move on?" After all, when you’re hurting, foremost in your mind is "When will I feel better?"

  • But in order to come to terms and move forward, you must first be able to grieve.
  • In order to grieve, you must recognize that you’ve lost something, and it helps to identify exactly what you’ve lost.
  • And in order to recognize and identify your losses, you must feel that your experiences are worthy of such attention. In other words, you must acknowledge that "Yes, this can be so very hard and no wonder I feel so bad sometimes."
  • When you can acknowledge, "This is truly difficult", then you can recognize your losses, grieve, come to terms, and eventually, in some fashion, move forward.

So, let’s start at the beginning, with this acknowledgment:

Having a premature baby is very, very difficult. Your world is turned upside down. If you’ve had little time to prepare, you may have no idea about what to expect and you may get little support from your friends and relatives—or even health care providers. Most important, a tiny baby who you love more than anything is very sick, and you may be told that not even the docs know if he or she will survive—or eventually be normal and healthy. If you are wondering whether your intense and painful reactions to your baby’s birth are "justified," try sitting down and making a list of all the things that have been easy. And you will probably find that the list is practically nonexistent. Here’s another way to think about life with a baby in the NICU: "Whenever you brush your teeth, you’re overachieving."

Even after your family is discharged from the NICU, parenting a preemie is challenging. Above and beyond regular parenting, you have extra worries and duties concerning germs, illness, development, therapy, feeding, growth, interaction, fussiness, hypersensitivities, and possible or actual disabilities. In short, you must let go of many of your preconceived notions about parenthood and learn to become a different kind of parent to a different kind of child. And here’s another fact of life:
"Particularly in the early years, every time you floss, you deserve a gold medal."

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