What I wish I’d known and what I’m glad I didn’t know

Eight years after my twins’ bittersweet birth, with Jared crying weakly and Bryan born still, I’ve had a lot of time to reflect. Many things I wish I’d known, and other things I’m glad I didn’t know. If you’re new to CLIMB, and new to grief, you can benefit from the wisdom I didn’t have at the time of my loss…and you can decide whether you want to know what I was happily naïve about!

What I wish I’d known

There are different styles of grieving.
There’s no “typical” way. My husband was intensely sad for 2 weeks, then went back to business as usual. It took me years to regain a sense of normalcy. Eventually I learned it was not unusual for spouses to be so different in mourning. It also wasn’t unusual for me to grieve so deeply for Bryan, “my twins,” and Jared’s prematurity. I needed support from a lot of sources. Other people work through grief more easily and move on to other pregnancies, adoption, or other life plans. They don’t miss their lost children less—they are just different. “Your mileage may vary.”

Grief for losing one multiple is just as intense as grief for losing a singleton.
Research studies confirm this. If I’d known, I wouldn’t have berated myself for prolonged sadness. What I couldn’t appreciate for years is that I am a mother of twins in a unique way—my pair is not together, but I must help my survivor understand twinship and express grief for an unremembered loss in the way he finds best. This keeps the loss present in a way that parents who lose a singleton do not have to face.

Depression is more common after a multiple-birth loss.
Most bereaved moms I know sought counseling, and many took antidepressants. I would have felt less like a failure if I knew that grief counseling and mental health consultations are almost routine after such a confusing experience.

Preemies don’t catch up by age 2.
Surviving monochorionic (shared-placenta) multiples are at risk for cerebral palsy, developmental delay and sometimes other problems. Doctors aren’t always aware of this, since it’s a rare situation. My son’s developmental delay was only picked up because I realized he wasn’t doing what he should at age 2 and a half. Jared was very irritable, and had “sensory integration dysfunction”—difficulties that are very real to occupational therapists and parents, but a myth to unenlightened pediatricians. Recent research, based mainly on singletons, shows lower average IQs and school performance for children who were very small preemies…but other research shows that former preemies with significant health challenges value their lives even more than their parents and doctors might have expected. Early intervention and special education maximize outcomes, so it helps for both parents and doctors to be vigilant for delays and get help early.

Breastfeeding helps survivors, but caffeine and medicines affect preemies.
Jared’s doctors never asked me how much pop or tea I was drinking to get through the day…didn’t ask what medicines I was taking while breastfeeding. Some of these substances undoubtedly made Jared more irritable. Concern and advice from the doctors might have made early months a bit easier while still enabling Jared to benefit from my milk.

Mementos and information are important.
I was lucky to get separate photos of my survivor and of my deceased son, but never saw, held or photographed them together. A local photo shop created a digitally merged photo of my twins together, and I know other moms who obtained beautiful sketches or pastels of their children. I eventually asked for prenatal monitor strips with both heartbeats, an X-ray taken of Bryan during autopsy, ultrasound videos, and my medical records. Seeing evidence that they were once alive together helped me to confirm the reality of my twins. Reviewing records reinforced some memories and also corrected distorted impressions from our whirlwind of sudden loss, urgent C-section and two weeks in NICU.

There are blessings that come from loss.
I’ve found new and deeper friendships, enhanced appreciation for life and children, growth and inspiration that I otherwise might never have had. Some parents whose multiples all died have written inspiring articles or books that will help others for years to come. Their children are quite real, and the good that came from their brief existence is a real testament to their parents’ love.

When working in health care after a personal loss, take your own pulse first.
As a physician, I did request that newborn twins not be assigned to me after returning to work, but never thought that routine NICU care, seeing babies named Bryan, attending funerals or encountering multiple moms would bother me as much as they did in the first two years. Not all health providers can avoid uncomfortable situations—but a warning from caregivers would help, plus preparing for “worst case scenarios” (name encounters, multiple encounters, similar situation encounters.) As one respondent wrote in a survey I conducted, about returning to work in a NICU: “Had I known, I wouldn’t have tried to be so brave.”

What I’m glad I didn’t know

Twin pregnancies are riskier than I thought.
I was terribly stressed with worry over how I’d raise 2 more boys on top of a rambunctious 5-year-old. I freaked out when I saw Elizabeth Noble’s loss chapter 12 weeks into my pregnancy and put the book away. I left management to the “experts”—my doctors. I honestly didn’t pay attention to the many things that could have happened in my identical, shared-placenta pregnancy…I didn’t have the energy or ability to worry about them. Since then, I’ve discovered that many doctors are woefully ignorant of the complexities of multiple pregnancy, recognition and management of complications. Denial and compulsive research are both understandable reactions to the same stress. If you know someone who’s too distressed to research a high-risk situation…encourage someone who loves them to be their advocate. It might save a mom’s or baby’s life.

There are an overwhelming number of ways that multiples die.
I am depressed when I write or talk about multiple-‘birth loss. Many nurses or social workers think only in terms of one twin dying, or a set of 21-week triplets stillborn. Terms like delayed interval delivery, multifetal reduction, selective termination, “going longer,” “knowing ahead” about loss, discordant fetal anomaly, TTTS are foreign to many people…and unless they’ve lived it, the professionals (and parents) have no idea of the complexity of our grief, and the differences between scenarios. When I write or talk about these situations, I see before me real people: photos, tearful discussions over coffee at a restaurant or at the back of an auditorium after a presentation I gave…there are too many of us who have suffered too much for the sake of some precious lives we’ve known.

Multiple & name encounters are common and painful.
I had a lot of difficulty learning to be composed & even civil around intact sets of twins and kids named Bryan or Brian. It’s still a bit hard for me to use that name to refer to a living person—and a close friend and an employee both are Brians. I expected it’d hurt for a few months or so…but not 8 years later. Many parents find it hard, even a decade or more later, to be around intact sets of twins, especially the type they lost. I know people who have multiples next door, down the street, or even in the same family. Some parents are twins themselves and lose one or both of twin children. Loss changes the relationship with all of the multiples we run into…even if our survivors seem drawn to intact sets.

Flashbacks come when you least expect them.
It was freaky for me when I was working at the hospital two years after delivery and forgotten memories surfaced when I was walking down a hallway, examining a newborn, walking to NICU. A nurse told me this could be normal, and post-traumatic stress disorder seems so over-diagnosed it seems trite, but sometimes I think our brain only lets us “know” and remember what we can cope with at the time, and slowly lets out these random images when we seem to be able to handle them. It’s a curious sign of healing…and many of my memories are still buried from delivery, NICU, and the first few years. I was glad no one warned me at the time of birth about this…but it would have been nice to know somewhere along the line that this could happen.

Grief can last for years.
I wanted this to be a brief, neatly tied up phase of life…a few months of grief, a little bit of counseling, then life back to normal. I suppose for some people it could be like that…but at least one study documented increased sadness after 5 years in parents who had lost a newborn twin, compared to parents who had had intact sets of twins at the same time. If you’re newly grieving now—this is not a “sentence” or a “certainty” that it will take you that long or be the most difficult event in your life, because it’s not like that for everyone. It certainly was a fork in the road for me, however, and I always hope, for everyone I meet who is newly bereaved, that the road will be a bit shorter, less windy & bumpy for them.

Attaching and grieving at the same time is a long, complicated juggling act.
Fortunately, most parents don’t seem to have much trouble getting attached to their living children…but for those who fear another loss, see reminders of dead children in living ones for a few months or years, or relive the loss every time we return to NICU, it takes a superhuman effort to overcome raw anguish, anxiety and uncertainty to risk attaching to a living baby with unknown prognosis. I am rather glad I wasn’t told at the beginning that this can sometimes be a long process…you can’t hurry time, and I was impatient and preferred not to know the risk of delayed attachment.

Survivors ask strange questions.
“Are there toys in heaven? Why can’t we go to heaven to visit Bryan? Why can’t he come here? Why didn’t God make a miracle and bring him back to life again? Can we go to the cemetery and dig him up to see what he looks like? What made him die?” I try to answer these to the best of my son’s understanding, true to my own spiritual beliefs and emphasizing my love for my survivor and his own good fortune. Once in awhile, I get childhood innocence and certainty. “Mom, people don’t cry on birthdays!…I’ll see Bryan again when I die when I am old.” We have no idea how our children are going to process the truth about their co-multiples, and we must word our answers so carefully, to support their self-esteem and not idolize or denigrate the children who died or the survivors. I do not envy parents with subsequent or adopted children, who are asked, “Would you have had me if the triplets had all lived?”

My childbearing years would end with a loss.
This was one of the hardest truths to accept, and something I did not want to admit for a couple of years. One wise doctor told me not to have another child if the main reason was to try for a “replacement.” Replacement children, or even just 3rd children in general, tend to have their own set of problems. The parents who’ve been able to have a successful subsequent pregnancy, even subsequent multiples which was my dream, often say there is some happiness, healing and even the “aha!” moments of normal singleton pregnancy and parenthood, recognizing “this is how it’s supposed to be.” I had to maintain the dream and the hope for another child, until for us it became clear that our family on the whole would be better off without trying one last time. I can be around little babies now and feel comfortable that that part of my life is over…but it’s taken some time to get there.

I end this essay not knowing what the grief journey will be like, or has been like, for you…except that it promises to be challenging and potentially life-changing in both good and bad ways. I encourage you to learn what you need to know, close your mind to things you really can’t or don’t need to deal with now, and realize there is a lot of wisdom in CLIMB for whatever situations or feelings you encounter in the future. If nothing else, realize others have walked your walk and felt your feelings. No matter how peculiar or unique your circumstances…someone has probably lived something similar.
Beth Pector