Another tragic aspect of the realm of multiple pregnancies and births is that with two or more babies, anything that can come up in a singleton pregnancy is twice or more as likely to do so – and some problems may be more likely to occur in multiples, or be a special risk of multiples. Over the years, we have known many parents who have learned during their pregnancy that one of the twins (or one or more of the triplets or quads) has a serious problem. They have been faced with a decision of whether to undergo selective termination, or whether to continue their pregnancy “knowing ahead” that one or more of the babies will not live long after birth (if it doesn’t die in-utero), or be severely compromised. Some of these problems may threaten the life or health of the mother, as well as the healthy baby or babies (and some parents face immediate decisions on experimental or other procedures to try to save the healthy baby, in conditions affecting monozygotic twins).
Some parents face receiving an adverse prenatal diagnosis of a condition that is not survivable – anencephaly, Trisomy 13, and Trisomy 18 are the ones we hear about most often. Others receive diagnosis of a problem that is severe, but whose nature, outcome, and the quality of life for the baby if it lives, are less certain – Trisomy 21 (Down Syndrome), hydrocephalus, kidney and heart conditions, and monoamniotic (in the same sac) babies are ones we often hear of, as well as some of the scenarios with Twin to Twin Transfusion Syndrome. As in Helen’s story below, these parents – along with the issues of any danger to the healthy baby and possibly the mother – are having to weigh quality of life issues that may make the decision even more complicated, if there is any possibility that the sick baby might live and be severely handicapped. Also, in some situations there is the potential for the baby who is healthy now to be severely handicapped as a result of events with the sick baby, if the pregnancy continues as it is. Although the reality of handicaps in multiples who do “make it” to and past birth is a major one, often a heartbreaking one, it is poorly addressed anywhere that we are aware of while being a major elephant in the room when it comes to these decisions.
The article by Grisaru and Lipitz in Iatrogenic Multiple Pregnancy, “Selective termination of the malformed fetus”, along with the inserts in it by Virginia Baldwin, MD and Isaac Blickstein, MD, is a current review of the medical and psychological aspects of this), as is Chapter 4, “Multifetal Pregnancy Reduction and Spontaneous Fetal Death”, of Roger Newman, MD and Barbara Luke’s book Multifetal Pregnancy (see Bibliography for both). Both contain many references which may also be of interest. The pamphlet listed in the Bibliography by the Multiple Births Foundation in England, “Selective Fetocide”, has been helpful to many parents. We plan to develop an article and other resources specifically on parents’ experiences with selective termination and the emotional impacts. For those who have undergone it, our site section If You’re Pregnant Now is a resource, the part called Going Longer. For parents who are continuing the pregnancy without selective termination, please see the part of that site section called Knowing Ahead. Anyone is welcome to share their story, as Helen has, and to join our Contact Registry for MFPR/Selective Termination (ask us for the form to join).
This is a truly difficult decision and we encourage everyone who is having to make it to take the time and effort to talk with a counselor who is experienced in reproductive issues, for support in sorting through all the facts and emotions and making a decision that they feel they can best live with no matter what the outcome, and to have a trusted resource to talk with during the rest of the pregnancy and after the birth and for as along as needed. We also encourage everyone to seek the opinion or second opinion of a perinatalogist (maternal-fetal specialist). We’ve learned that not all of the information and support groups involved with pregnancy, multiple pregnancy and complications of multiple pregnancy support parents who are having to consider selective termination; you’re welcome to check with us for a listing of those who do.