FAQs: What about the medical aspects of my loss?
I have questions about whether my babies were identical or fraternal, how my pregnancy was handled, and what happened to cause my loss. What do I do?
For most parents who have experienced the loss of one or more of their multiple birth babies, the medical aspect of their experience is very important. In fact for most of us, coming to a better understanding of what was involved medically is a really integral to our being able to find any peace at all with our loss, because it is completely intertwined in it. By the same token, having unanswered questions is often a major source of discomfort and pain (even though having the answers can be difficult also). We all need and deserve to know as much as we possibly can (especially if we’re considering another pregnancy, but also if not) – they were our babies.
It’s for this reason that we’ve included some things in this site about the medical aspects of multiple birth loss, even though we are a group of parents whose mission is emotional support. We hope that some of the information in the Bibliography will be helpful in pointing you towards what exists. Dr. Keith and Dr. Blickstein’s books (with another edition in progress now) and Newman & Luke’s book represent a tremendous effort to fill the gap of available information, research, and medical education on multiple births and to show what more is needed. To many parents, it comes as a surprise that especially in the U.S. not only are there no requirements that risks of multiples be disclosed at the time they are diagnosed, but that there is no set standard of care for multiple pregnancies and births. There is no “It”, based on comprehensive research, that you experience if you go to any obstetrician or perinatologist. (And apparently, multiple pregnancy is not treated as a separate topic in medical schools or residencies.) Caregivers are free to interpret whatever research that exists and that they are aware of in any way that is medically reasonable. This means that monoamniotic twins may or may not be delivered at 32 weeks, twins may or may not be allowed to go past 37-38 weeks, premature labor may or may not be treated with tocolytic drugs under some circumstances, and many other things. (These same kinds of things are also true for the fertility-enhancing drugs and procedures that may have helped create the pregnancy.) And it means that parents who (as all of us are) are looking at all the “what-if’s” and dealing with the frustration of not being able to go back and somehow make things turn out differently, and often struggling with guilt and anger, have to remember that there is not necessarily any one “right” answer. Sometimes it is impossible even to determine the cause of the loss despite the best of testing, diagnosis and care. But it is very important to ask the questions and get all available information to understand it all as much as possible, and to not have painful misunderstandings.
Besides researching, these are some steps that have been helpful to some:
1) having a conference with those involved in their care. As the article below points out, this may be a few weeks after the loss, but even several years later. By going over all the available information, key questions you have may be able to be cleared up.
2) determining the zygosity of the babies – were they “identical” (monozygotic), fraternal (dizygotic), or (in the case of triplets or higher) both. Babies of the same gender may be fraternal even if they seem to look alike, and babies who are born after fertility technology may be identical (and in fact, as noted in the Bibliography, often are). Blood testing and sometimes DNA testing may be necessary if examination of the placenta(s) and membranes is not conclusive. If the babies are monozygotic, knowing that is a form of knowing the “cause” even if the specific cause isn’t known, just because of the very high and unique risks for those babies; it also means that the problem might not recur in a subsequent pregnancy that wasn’t identical twins. Also, knowing the zygosity is helpful to many in knowing how to mentally picture their babies, as well as looking at their chances of conceived twins again or not.
3) having records reviewed by a perinatologist. Obstetricians specialize in all pregnancies (including the majority which are normal) and perinatologists specialize in maternal and fetal conditions and problems which may arise in pregnancy or at birth. Some parents have found it very helpful to have all their records and information reviewed by a perinatologist, perhaps in the nearest large city or university medical center, especially if they are considering another pregnancy. If there isn’t a perinatologist available to you and it is difficult to find an obstetrician to review them, you may wish to check with a local attorney. Those who handle medical malpractice cases usually know physicians who are willing to review records and offer an opinion, and doing this should not obligate you to taking any action.
Some parents have at some point come to the conclusion that their care was below what was reasonable and have decided to look into the possibility of legal action. Some have been involved in taking legal action, with a variety of results. It is a very difficult process emotionally to go through in addition to the rest of the grieving – but we have noticed that for those who did, it was because not doing it still would have been worse than doing it, because of the nature of what happened. Some of our members who have been involved in legal action are putting together some interviews of others who have been or have considered it or other types of action.
Here is a link for an article by one of our members who is both a bereaved parent and a physician, and the experience of another mother.
“The Search for Why” by Elizabeth Pector. M.D.