Supertwin loss: what we have seen, what parents face
The single most prevalent kind of supertwin loss in our group over the years has been the loss of one triplet. By far the main cause is prematurity, but there are many deaths in-utero both earlier in the first and second trimester of pregnancy and all the way up to “term”, and also many who make it past prematurity only to have one of the babies lost to a heart condition, a cord problem or something else that can occur in any baby or, like Twin to Twin Transfusion Syndrome, is unique to multiples. Many of the sets, including many of those conceived after fertility technology, contain two babies who are monozygotic (“identical”) and share a placenta and sometimes also are in the same sac, creating what is in many ways the ultimate high-risk pregnancy. Many have given birth to triplets who were premature but did well, only to lose one of them (sometimes the one who was doing the best) to a hospital infection or condition like NEC, Necrotizing Enterocolitis. We have noticed an increase in the number of premature babies who survive the postnatal period but die in infancy – with advances in technology, they were able to live much longer than they would have in the past, and yet technology has not been good enough to save them. Also in the category of the effects of technology on all of this, there are so many who learn through early ultrasound that they are expecting three, only to learn later that one of them has died later in the first trimester or in the early second trimester; and many others who have decided to undergo “selective reduction” (MFPR) from three to two in hopes of improving the outcome. Many moms in both these situations have found that they experience significant grief later, and often feel that no one understands, they can’t talk to anyone. Other parents face these losses after having conceived three (or more) babies and deciding not to have MFPR (sometimes because of their personal beliefs, sometimes because of their take on the relative risks presented, and sometimes because it had not been offered as an option).
All of these things also of course come up in quad or higher pregnancies. With the risks being even higher, parents are even more likely to have lost two of the babies, and to have survivors who are extremely premature. One of our very first members was Kriss, whose story of her quads (spontaneously conceived) and the loss of two of them, one after birth and one at seven months old, is in this section, along with her updates of her grief process and her survivors, who are now 16. Much has been written about how stressful it is to raise and care for infant multiples, and multiples who are preemies – but these parents along with those who lose one of their triplets face the most stressful situation of all parents who have living multiples, parenting two or three or more tiny babies while simultaneously experiencing the loss of one, two or more other babies…It’s very possible, we think likely, that it is all more stressful than “simply” tackling everything involved in having them all if they had all lived, no matter how challenging that would have been. Many have felt that while they were really needing and wanting to feel ok for their survivors – whom they were all the more so grateful to have, and were up to here in caring for them – they were depressed because they were also needing to grieve for their baby who died and did not feel they had the right to say anything, or anyone who would understand. Also, they are even less likely than parents who have lost a twin to go to infant loss support groups. And there is the sheer sadness. One mother of quads wrote, My life in this past year has been very full – but not so much that I don’t still feel a giant chasm that was supposed to be filled with my Sarah’s life. Almost every mom we’ve known who is surrounded by four babies who are survivors of quintuplets, has said that she wonders whether the day will ever come when she does not cry for that baby.
Parents who have more than one survivor also face the situation of how to refer to their children, how to introduce them, and what to say to others when they refer to surviving quads as “triplets” or surviving triplets as “twins”. This is the one thing that everyone in touch with us has mentioned being the most difficult thing to cope with, and we hope to develop a survey of experiences with this to be included in this section. With fertility technology, there are quite a number of families who do have living twins as well as having survivors of triplets or higher from another pregnancy, and that is another “twist” to this dilemma.
There is also a significant group of parents who have one living baby who is the sole survivor of three, four, five or more babies. Some have lost one of their two remaining babies after earlier miscarriage or MFPR, or lost two of their triplets to miscarriage or MFPR or selective termination; some have lost two triplets to Twin Transfusion Syndrome or being monoamniotic. As in other multiple birth situations, there is the possibility of combination losses from separate causes – losing one triplet to death in-utero, and finding out that another has a congenital condition, for example. Most often, the babies were very premature, so much that only one of the three, four or more babies survived – and that means that parents experience many months of their baby being in the NICU, and major special care and health issues after finally being able to bring him or her home. For everyone, it is incredibly bittersweet and a true parenting challenge to know that your little baby – who looks to all the world to be a singleton baby – is really the one survivor of a much larger group. For these parents, the fact that the baby is really a triplet, quad or quint doesn’t come up unless someone asks or needs to know, or unless the parent chooses and finds a way to say it. There was a member of our group who had a young son who was the survivor of 26-weeks quads, and also older twin girls who had also been premature. When people commented on her twins, she’d say to herself, You think that’s something… (Later, her family was featured in an article in the local newspaper.)
Probably the single most complicated experience we know of is that of Chrissie, whose story is in thissection (and also the section for those who are pregnant now), who conceived sextuplets and lost four (and almost, 5) of them at three different times from different causes, plus experiencing guilt over having had to consider reduction. We hope that nothing will be “off the map” and that parents with any kind of supertwin/HOM loss will seek and create every kind of support for what they are having to experience as people and as loving parents.