Coping with the loss of a multiple to SIDS

Here are some of the special issues and questions faced by parents who lose a twin or higher multiple to SIDS:

· Will my other baby die too? When an infant twin or triplet dies suddenly for no apparent reason, and the parents are informed by their pediatrician and the coroner that it is ”probably SIDS” (the final diagnosis is made several weeks or months later after the autopsy is complete), their first concern along with their grief is for their surviving baby or babies. Sometimes the survivor is hospitalized for a day or two for observation. As with other areas of multiple birth loss, comprehensive statistics are not kept and the information that parents get about the risk for their surviving baby or babies seems to vary. Alice Check has authored an article, included in this section and currently being updated, which compares the available information about SIDS in twins and the risk for the survivor, which seems to be quite small. We should note here that over the years, we have known four families who have lost both of their twins to what was diagnosed as SIDS, and for three of them it was at the very same time. We have also known two families who lost a surviving twin of birth loss to SIDS, as well as of one family who lost two of their identical triplets to it at the same time – enormous tragedies and at the same time a tiny percentage of those we’ve known who have lost one of their multiples to SIDS.

· What about monitoring? Some families are offered home monitoring for their surviving baby or babies. Even though this cannot prevent SIDS, some families do it for a time because they rest better knowing that if the alarm is not going off, the baby is ok. Others do not do it and/or find that the logistics and other stress of it, including malfunctions at times, is more than it is worth. Parents who lose a multiple to SIDS have the necessity of immediately learning more about what SIDS is (and what it isn’t) and making an informed decision about monitoring as well as the outlook in general for their surviving baby and how they will relate to that. Parents are confronted with all of this and their fear for their survivor in ways that don’t occur with parents of a singleton SIDS baby until later and the decision to have a subsequent child – and these babies were part of a set, ”my twins” or triplets.

· How do I grieve and care for my survivor? The heartbroken parents must continue without a break to care for the surviving baby or babies (a task which many normal families find stressful) while often overwhelmed with feelings of guilt, grief and depression, along with the fear and feelings of vulnerability for their survivor. They are also forced to begin the inutterably sad process of ”de-twinning”, or what someone else has called ”going from a two-baby family to a one-baby family” (or from three babies to two living). Parents who have been there suggest that others seek and accept all the support they can get from others – relatives, friends, neighbors and their church or social group – in caring for the surviving baby or babies and the household and helping meet the needs of any older children, so that the parents are able to grieve when they need to, and can get a little more sleep and food than they might otherwise. Others can also assist with exchanging strollers if necessary, and other ”practical” aspects of this. Communication between the parents is really important, and each knowing when one is having an especially difficult day. Parents can do whatever they need to to make it all as do-able as it can be, for example having the surviving baby sleep near them in their room if that is a help (with attention paid to the safest way to do so, including the current recommendations on sleep positioning).

· What about support? Many have been felt helped by participation in a support group – a good way for a relative or friend to be helpful is to check out any local SIDS/OID support groups, infant loss support groups, and any local chapter of The Compassionate Friends (see Other Resources) and see what their receptiveness in this area is. Many parents have felt very much helped by individual counseling with a professional who is sensitive in this area; and as we have said in other contexts, we believe that counselors should not at first require that the mom leave the survivor at home while she comes in – that should possibly be a goal of the support, but not a requirement or barrier to coming in at all. Some parents, especially those whose survivor is on a monitor, have arranged for someone to care for the baby in the waiting room – dad, after work, or (even better so that dad can be there too) a trusted friend or relative. One mother, who lost one of her ”incredibly healthy” quadruplet daughters to SIDS, wrote, After Praise died, we sought guidance in coping with so many changes in our lives in such a short period. The major advice we received was to make sure we grew together through these events rather than drifting apart. Though nothing can make parents feel ”good” now, seeking and accessing these kinds of support are really evident in how parents are feeling and functioning several years later, including in raising and talking with their survivor or survivors. We’ve known parents who did not and had some very serious difficulties (requiring more intervention) in the three to four-year period.

· How will my surviving twin or triplets or more relate to this? Along with their own grief and anxiety, parents are concerned about their survivor missing his or her twin, and how he or she will relate to their loss in the long run. The most clear example we’ve heard of a baby noticing the absence of its twin was from a mom who said that her ”identical” sons had been very large and mature from birth. They had had a special ”name” for each other, a noise that each one used to call the other; after one of them died of SIDS, the survivor would call to his twin (sometimes near a mirror) and then call back to himself with his brother’s call for him. Elizabeth Pector, MD’s article in our Survivors section discusses much of what is known and many of the issues about survivors, and some of the other things there are of interest as well to parents who have lost a multiple to SIDS, including Dr. Bryan’s articles. It’s very important that parents get the most support possible, so that they can see as much as possible what are their own needs and feelings, and what are those of their child at a given age; and develop ways of remembering the multiple who died within the family in ways that ”work” for everyone. Thanks also to Alice Check for her interview in this section (with her story) of a 12-year-old surviving twin, and we welcome comments and stories from other survivors. Sometimes parents are dealing with other issues with the survivor as well – some have experienced the loss of their ”healthier” baby, and their survivor has special needs or handicaps which involve additional challenges.

· How do I deal with others (including the sometimes insensitive comments)? At the same time they are experiencing all of this, parents must often cope with people who try to console them by saying, “At least you have one baby (or more)”, or other attempts to rationalize things for the comfort of the person saying it. One mother who after years of infertility lost one of her triplets to SIDS wrote, People often said, ”It will be easier now…” How can grieving your baby and being a new parent of her two newborn siblings possibly be easier??? Parents of twins often hear that comment too –when in reality, having a quieter, one-baby household is horrifying, not comforting. Parents of twins no longer receive all the attention that they did when going out with the babies, and are confronted with strangers asking, ”Is he your first?” Most parents are see living sets of multiples of the size as theirs, and sometimes have other twins or triplets among their relatives and friends who cannot be avoided, while theirs may not be recognized. (One mother’s sister became pregnant with twins not long after, and the family insisted that she care for her while on bedrest without ever acknowledging that she too had had boy/girl twins and lost one to SIDS. Others have taken photos of all the twins in the family without including the baby who is a twin survivor of SIDS.) Many parents, moms especially, have joined twins and multiples clubs and in some cases been very active in them; thus many of their friendships and activities are with others who have multiples, and their social life has been revolving around having the babies. (Some have chosen to remain involved in their club, though the majority don’t.) All these things are very difficult to deal with, and for many parents it’s much later that they know what they wish they would have said or done. But many have found that speaking up – trying to say or do something that acknowledges the baby who died, the twins, and how difficult it is – is much better than shutting up for fear of upsetting others. Parents are the ones who are suffering the most, and it seems better to not to worry about others’ passing discomfort if it means trying to stay ”sane” and honest.

There is simply no such thing as too much support and we urge parents to speak up, speak out and seek every opportunity in finding their way through this ultimately stressful parenting experience.