FAQs: Is my loss rare?

Is my loss rare?

Parents are often told that their multiple birth loss is “rare”, and it may seem so in the practice of one doctor or one group of physicians. Also, the media and the information and organizations dealing with multiple pregnancy and birth tend to stress the positive outcomes. But in the United States, a country with nearly 4 million births per year, even something that occurs in 1 in 25,000 pregnancies will still mean that 160 families are affected, for example. With the increase in multiple conceptions and births, and the higher risks – both of which are discussed in the article “Significance of multiple birth loss” on our homepage – not too much is truly rare. Here, it is rare that a week goes by that we don’t hear about more losses from Twin to Twin Transfusion Syndrome, the babies being monoamniotic, and other “twin” conditions that may come up only several times a year or less in a doctor’s practice but that add up on a national level (plus Canada, Australia, New Zealand, and beyond). Also there is the fact that anything that may affect a baby, for example, one of the congenital conditions like Trisomy 13, is twice as likely to come up in a twin pregnancy simply because there are two babies (and three times for triplets). There are many times that we’ve put people in touch who live only a few miles from each other but never knew, imagined, or in many cases were not told, that there was anyone else. Based on available data, in the “Literature review” article linked on our homepage, we estimate that 30,000 families in the U.S. annually may experience being diagnosed with twins who did not celebrate their first birthday together, and approximately 3,000 families of higher order multiples who did not.

To the extent there has been attention to loss in multiple birth, much of it has been to the loss of one twin. This makes the loss of both or all of the babies seem even more rare – but sadly, as the limited matched data in the “Significance” article shows, of those who experience a loss in multiple birth (in the U.S.), 45% may experience the death of both of their twin babies. This is not a rarer-than-rare tragedy, and it deserves as much attention as it can possibly get, as discussed in the “Researchers needed” article on our homepage.

All that being said, there are still a number of situations that are less common than others. Sometimes these are combination situations with more than one problem with more than one baby, and then the circumstances of the parents, so that the overall experience is unique – as all of ours still are in some ways. We encourage you to learn everything that you possibly can about your loss(es)…and no matter what your situation was and is, to work with us on finding information and contacts with others that connect with the various aspects of your experience, even if there isn’t one person we know who is an exact match with everything.