Prematurity Impacts : Preemie Parents and Peers

When you have a preemie, it is difficult to find a peer group.

By Mara Stein

When you have a full-term baby, you automatically join a community of parents. There are children of varying ages, with a variety of skills and limitations all around you. There are tons of parents whose opinions, experiences, and lessons learned are available if you want them (and often even if you don't want them).

When you have a preemie, the nature of the delivery makes it difficult to find a peer group. Our natural peer group is other parents of preemies. But that is a peer group that is also highly charged with emotion. Instead of having a well-worn path to travel (more or less), we're faced with a series of unknowns. Just as in the full-term world, parents focus on different possibilities.

For some, comparing their child with others reduces their anxiety (though they may be setting themselves up to be disappointed or devastated later). It's like entering a gigantic obstacle course -- some people want to see all the possible land mines and find reasons to reassure themselves that their child is different and won't fall prey to this or that complication.

For others, seeing and hearing about babies who appear to have avoided serious complications gives them hope for their own child's future. Of course, nobody has a crystal ball, and it's the unknowns in this situation that torture us all.

I suppose it's partly because when you have a preemie, the chances of encountering serious obstacles is so high, that these sorts of comparisons and this sort of "magical thinking" is so potentially devastating. In the full-term world, in most cases, the child who hasn't started walking by 12-months, most likely will by 18-months. In most cases, there aren't other risk factors and reasons to worry. Not so when you have a preemie. So those comparisons are sharper and more loaded with emotion.

When you voice these worries, and are told to just wait, that things will get better, or that you are imagining things ("He'll outgrow that; Oh, all kids do that; You're just hyper-vigilant, relax!"), you are likely to feel brushed-off and misunderstood. Preemie parents are often stuck. You wish that you could feel "normal" and not worry so much, but at the same time, you feel a responsibility to monitor how your child is doing. One way to monitor is to compare your child's situation with others. Parents of full-termers do this as well, but it has a less urgent quality to it since they do not start out with the same losses or the same risk factors as parents of preemies.

In addition, needs change over time. Parents who start out drawing comfort from comparisons may come to a point when they can truly appreciate the unique path that each child takes. Until that time, no amount of explaining or reassuring will really help. Sometimes, you may just need to hang on to your internal tabulation of what your child has escaped and what your child has accomplished in comparison with others you know. It can take a long time to really accept how hard it is to predict how our children will do, and what little control we have over the outcome.

Remember, also, that for each parent, the meaning of a particular diagnosis is different. One parent may be devastated by a diagnosis of ADHD, while another is relieved. So the ways in which parents reach out to one another may be surprising. One parent may worry entirely about medical outcomes, and be shocked to hear about developmental outcomes. Another may feel that she can handle any medical eventuality, as long as her child can do "x." This is similar in the full-term world. All parents worry about their kids. All parents wonder what their children's peers can do, and how their child compares. For parents of preemies, the potential answers aren't just interesting or fun; the answers reflect on our feelings about how much we wish we could have brought our children into the world at term, and our desire to erase the impact of that early arrival.

All of this comparing, all of this questioning and wondering is a way of making sense out of the birth and development of your child. Nobody prepares you to give birth to a premature baby. It's tough to find a circle of peers who will support and understand your worries and your triumphs. Give yourself permission to think about these things without berating yourself. Remind yourself that if your child was full-term, you would also be doing this, but it wouldn't feel so intense. And most of all, always voice your worries and broadcast the triumphs!

Mara Stein is a clinical psychologist in Chicago and the co-author of Parenting Your Premature Baby and Child: The Emotional Journey