September 11, 1991

"She left us all too soon ..."


"I have very grave news," the hospital pediatrician said. "Your wife has given birth to two beautiful little girls, but I am afraid one of your daughters has died." With those words, reality disappeared. My mind raced as I tried to assess and make sense of the situation. Our dreams suddenly fell to fragments. "We're not quite sure what has happened -- both of your daughters had appeared quite healthy."

Carolyn Emily (1295 g or 2 lbs, 13.5 oz) and Robyn Alexandra (1695 g or 3 lbs, 11.5 oz) were born by emergency caesarean section just before 1:30 pm on September 11, 1991. Within half an hour Robyn had died. Shortly after that, the doctor came to me with the news. We knew a twin pregnancy was high risk, but "high risk" suddenly took on a very real and personal meaning. Close to an hour later, Judy was brought out of general anesthetic in a recovery room.

I was stunned at the news of Robyn's death. At 12 weeks of pregnancy, Judy and I had faced the wonderful and unexpected revelation that we were expecting twins. Our spirits soared as we told every living acquaintance about our "instant family" and we proudly displayed our ultrasound two-baby picture. Judy had a very normal pregnancy.

At 31 weeks, Judy had come to the hospital early in the morning complaining of nausea and a sore back. However, the fetal heartbeats had appeared healthy and the ultrasound scans (once they found both) showed two normal babies of a good size. Judy stayed at the hospital for observation. Our doctors sent me back to work.

Scarcely two hours later Judy left me a voice message to return to the hospital. "I hope you can come to the hospital. The doctors have decided to deliver the babies -- now." Her voice had trembled with uncertainty; still, it all seemed normal -- after all, we were expecting twins, and they were just coming early. I raced to the hospital with excitement and anticipation.

I arrived at the hospital at about 1:30, just as the second of our daughters was delivered. I asked to be admitted to the delivery room, but was directed to remain at the nursing station. The minute hand whirred around the clock as I waited. I began to fear that something was wrong. I worried that something had happened to Judy -- I thought she had died. Ironically, I never for a moment suspected that the babies were in trouble.

After I learned that Robyn had died I was dazed and shocked, and then my imagination went into overdrive. I wondered what I would tell Judy when she came out of general anesthetic. The doctors had tried to revive Robyn for 25 minutes, but weren't sure why she had died. Carolyn had needed resuscitation and her condition was still being stabilized. The doctors suspected Robyn and Carolyn were identical, and disease and congenital defects were possibilities. The doctors were non-committal about Carolyn's chances of survival.

After being X-rayed for operating utensils -- in the emergency to deliver our babies there hadn't been time to pre-inventory the equipment -- Judy was finally brought out of anesthesia. I was relieved to see her alive. As she spoke her first words, still groggy, I realized she was asking me how the babies were. I couldn't answer. I could only ask Judy how she was. I could see in Judy's eyes that she knew something terrible had happened. My heart broke. I blurted out that one of the babies had died, that the other was alive, and that what had happened was uncertain. The tears flooded in. We felt so helpless, so hurt, and so afraid. The babies had seemed so vibrant, so alive, such a short time ago. We couldn't believe that Robyn was dead, and we feared that Carolyn wouldn't survive.

And we still hadn't seen the babies.

The hospital staff were exceptionally supportive. They all suggested we might want to hold Robyn. It seemed at first like a terrible, gruesome idea -- but Judy and I both wanted to see her. We realized this might be our only chance to see our daughter -- ever -- and without seeing her we couldn't accept the reality of her death. Still unable to accept that she had died, I wondered if Robyn had been sold or stolen from us.

A nurse brought Robyn to us, "bunnied up". We held Robyn tenderly and eagerly, fantasizing against reality that our love would somehow breathe in life and revive her. We carefully removed the receiving blanket. Someone thoughtfully had dressed Robyn. An angelic white bonnet adorned Robyn's head. She was dressed in fresh mint-coloured booties and a clean white diaper. We couldn't hold her long enough. When we passed Robyn back to the nurse it was with an anguished sense of finality. We never saw her again (we didn't realize we could have).

Our short time with Robyn is now one of our most cherished moments. Five Polaroid photographs taken by the nursing staff help us to remember Robyn. The nurses also gave us her identification bracelet and a copy of her foot prints. Later, we wished we had taken a few locks of her beautiful blonde hair.

Finally, I was allowed to see Carolyn in the Neonatal Intensive Care Unit (NICU). In her isolette, surrounded by monitoring equipment, she seemed so precious, small and vulnerable -- with three electrodes pinned to her chest, an IV needle fixed in her arm, a tube threaded up her nose and into her stomach, a monitor taped on her foot, two catheters inserted in her umbilical stump, and a ventilator assembly placed into her mouth and windpipe. My mind's eye imagined Robyn intubated and ventilated and receiving chest compressions.

Later that night we selected names for Carolyn and Robyn. It was never a question whether or not to name Robyn. Later, we discovered this to be very helpful to others in talking about Robyn as a person, rather than "Twin A" -- it gave her a sense of identity and existence.

On that first night, at a friend's suggestion I stayed with my family. It was a good idea. The next morning I awoke with eyes clenched, desperately hoping to open them to discover the end of a terrible dream. I opened my eyes and was devastated. I began to compose a birth announcement for the newspapers, and was quickly overcome with aching, unbearable and helpless grief. Somehow, I made my way to the hospital and, through a torrent of tears, Judy and I managed to finish the announcement. It went like this:

NETTLETON/RHODES -- Judy and Michael announce the birth of twin girls, Carolyn Emily and Robyn Alexandra, born September 11th, 1991. Our hearts are full of joy and love for Carolyn. She is recovering well in the NICU, and we look forward to holding her and bringing her home soon. Our hearts are grieving with our love for Robyn, whose life ended after a valiant struggle. We will always cherish our short time together.

Our friends, family and the hospital staff were tremendously supportive. We were overwhelmed with visitors, telephone calls and flowers of support. Many people sent us two cards, not wishing to mix sympathies and congratulations in one. We even received best wishes from people we hadn't met, who had been moved by our announcement in the newspaper. We were tremendously thankful for all this support, which helped to sustain our spirits during a very dark time.

I stayed at the hospital for the rest of Judy's recovery, sleeping on a mattress on the floor. I couldn't have beared to stay away from Judy and Carolyn. I was allowed 24-hour access to the NICU and I spent many late (and early) hours just watching Carolyn in her isolette. Carolyn was identified as Nettleton B and this was always positive for us -- it reinforced her being a twin.)

It was late on the second day before I had the courage to talk with another couple in the NICU. Conversation revealed they were parents of premature IVF triplets. Something possessed me to reveal that Carolyn was a twin and her sister Robyn had died. Then I discovered that they had premature g/b twins a year earlier -- and both babies had died of complications, dying in their parents' arms at about a week old. (Their triplets are all survivors, and went home from the hospital a week before Carolyn). Our shared grief created instant friendship with the other couple as we began to discuss our common feelings and reactions. They told us that ten minutes of videotape are their only record of the life of their twins. During the next few days I exposed miles of video and photographs of Carolyn.

Within a few days of Robyn's death we received a verbal autopsy report. We had requested the autopsy to try to pinpoint the cause of her death, to support specific treatment for Carolyn in the event of disease or congential problems.

We learned that Robyn died from congestive heart failure arising from twin transfusion, a condition that can arise in identical twins sharing a common placenta. In this condition, one twin receives too much blood while the other receives too little. Twin transfusion is often fatal for both twins. It can sometimes be detected by the development of a sudden size differential -- which, unfortunately, had not been evident in our twins even in an ultrasound scan performed two days before their births.

Coupled with Carolyn's significant progress in the NICU, the autopsy results were both encouraging and distressing. On the one hand, we were relieved at the confirmation that Robyn's death was not caused by disease or congenital defects. On the other hand, we became obsessed with wondering whether we could have detected signs of the twin transfusion earlier -- although we later realized this was only an anguished, troubling and futile mind game.

We waited until Judy was out of hospital before arranging Robyn's funeral. It seemed both poignant and strange to be visiting the cemetary and funeral home in between trips to baby furniture suppliers and visits with Carolyn in the hospital. For many weeks we faced the roller coaster contrast, wrenching between the emotions of elation and despair.

Our funeral director was exceptionally sensitive to our situation and had many practical suggestions for us to consider. Foremost among these was arranging a quiet visitation with Robyn in her casket at the funeral home. At first the visit didn't seem necessary to us -- we had held her in the hospital and we strenuously opposed opening her casket. The funeral director set up a room for us anyway -- and at the last moment we decided to go, together and alone. It was a profoundly moving, heartbreaking and important experience. We were glad to have visited; in retrospect we should also have invited our own parents, something we didn't even consider at the time.

Robyn's funeral was a touching and healing experience for us -- and for our many friends and family who attended. Particularly poignant and consoling was the homily delivered by our minister and friend from which I have drawn these two excerpts:

"On that eventful afternoon in Women's College Hospital, surrounded by people who had done everything they could to give Robyn life, the Good Shepherd called her name and she followed him because she knew his voice. Like all the other sheep, she would never have followed a stranger." ... "Robyn Alexandra, conceived in love, baptized in the water of her mother's womb, and born into the great family of faith, was faithful unto her life's end. The little lamb has followed the Good Shepherd into the sheepfold and now lives eternally with God."

Time has passed, yet Judy and I think about Robyn often (each day, we see her reflection at home). We always see Robyn in everyday reminders in our thoughts and conversation. We will always miss her deeply.

We held Carolyn on her third day in the hospital. She came home after seven weeks in the hospital -- still two weeks in advance of her due date. She is a healthy, sociable and well-adjusted child who as a toddler, sang herself to sleep. We will always be grateful for the fast and competent action of the medical staff who saved and sustained her life.

See Carolyn's story.

© 1992-97 Michael A. Nettleton