Six years ago today this child, Sylvie Beatrice, and her identical twin, Stella Anne, played the best and worst (combined) April fools prank I've ever been subjected to. About a week earlier, I had gone to the doctor feeling like something was not right. The ultrasound revealed that I was pregnant with twins (amazing! miraculous! joy!) but that one of the babies was not moving (joy fled). The doctor kept squinting at the screen, like he was trying to understand what he was seeing, so I decided he didn't know what he was talking about. In my heart, I just knew that both babies were alive. Then, with urgency, he told me that I would need a specialist (he was a general practitioner). He called a colleague, then told me I would be met at the Emergency Room and I should go straight there. This only increased my hope. Why hurry if my little one was already lost?
When I arrived at the Emergency Room, I was indeed met immediately and whisked past everyone waiting in the horrible plastic chairs. My new doctor was older, authoritative, and very courteous. Before I could wonder what would happen next, I was receiving another ultrasound. My new doctor told me that this was the best machine that existed, and that it could allow him to see details that no other ultrasound equipment could detect. Three residents stood around him and slightly behind, watching his every move. He pointed to the screen and said, "There's the first one, see? And there's the second." My heart soared. Then he looked at me, and said, "I'm terribly sorry for your loss."
"The baby's dead?" I was truly incredulous that this expert couldn't see anything more than the other doctor had. What was the point of coming here?
"Hand me that box of Kleenex," he said to one of the residents. Then he laid aside the ultrasound equipment, and handed me a tissue. "I thought you knew?" he said.
"I had hoped..."
"This must be so hard for you." He stared at me with compassionate eyes while I blew my nose. "Do you need some time, or should I continue the examination...?"
"It's okay," I said. "Go ahead."
He returned to his work, pointing at the screen and telling the residents to look closely at various aspects of the picture. "I think I know why all your babies have come early," he said to me. "You have a kind of shelf in your uterus. It's very rare, but it would explain the premature births." He showed me a shadowy line on the screen. "At a certain point, it would get a little cramped in there."
"Is that what happened? To the baby...?"
"No," he said. Then he explained to me that the twins were identical: "Now, when the fertilized egg divides, rapidly in the first few days, it can split into two separate embryos. If it splits early, then each baby develops its own amniotic sac. But your twins split quite late, probably around day 19."
"So, they are in the same sac?"
"Yes, and they share a placenta. That's quite rare." He looked at me. "It looks as though their umbilical cords are attached at the same point. When that happens, it's called Twin Twin Transfusion Syndrome. It means that they shared a blood system. It's a very dangerous condition for the twins. One usually has abnormally high blood pressure and the other has abnormally low blood pressure."
"The other baby...?!"
"Is stable, for the moment. Everything looks fine. But we're going to have to keep you for observation."
They were girls. I asked him to tell me so that we could name the baby who had died. We named her Stella. Because they shared an amniotic sac, Stella could not be born until her sister was. They released me the next day, and told me that the pregnancy should continue normally, now.
On Easter Sunday, March 31, though, I began to feel contractions while sitting at the dinner table. The baby wasn't due for another 11 weeks, and though all my girls had come early, they had never been this early. I decided, even though the contractions were coming quite regularly and with considerable force, that I was not in labor. By the time I realized that the baby was indeed coming, it was nearly too late. My husband rushed me back to the same ER and a surreal nightmare began. I couldn't seem to convince the residents and nurses that I had gone beyond transition, that I had the urge to push. They assured me that they had called my doctor, and that he was on the way. I tried to explain that there were two babies, that I was 11 weeks early, that they were about to be born. "Should I take off my clothes?" I asked. "If you want," was the answer, with rolled eyes. My husband rushed in after having parked the car. I told him that they didn't believe me, that no one would even examine me. He began shouting, "She knows what she's talking about! She's already had three babies!" One of the residents told him, "Stay cool, man." I begged him to at least examine me. He looked at me like I had some sick fetish, but reached slowly for a latex glove, just to prove to us that we were over-reacting. Then his face changed. "She's complete!" he shouted. "I've got a transverse breech! Call a code! Now!"
"Transverse breech..." I muttered. "What does that mean?"
"I felt a hand," he said, without looking at me. It was 12:18am. I had arrived at the ER at 11:56pm. Things began happening very quickly. My bed had wheels, and I was flying through the hallway, into a small white room with no windows and very unpleasant, glaring lights. I knew I was about to have surgery, though no one had told me. The panic was almost unbearable. I was praying Hail Marys out loud, not bothering to count decades. I felt certain I would die. A kindly white-haired man stood at the foot of my bed, and said, "This will happen fast." A mask slipped over my face and then off. I wasn't asleep, but I couldn't move. When they entubated me, I felt myself choke and gag as the impossibly wide plastic tube was shoved down my throat. It seemed unnecessarily cruel to torture a dying woman. Then I felt the tube being pulled back out of my raw throat, and I was wheeled to another room. I have never had physical pain like that before. The general anaesthetic had worn off, but they didn't want to give me morphine, yet.
The phrase, "screaming in pain" seems really stupid to me. I was in so much pain that I couldn't make any noise at all -- I could barely whisper. The clock said 12:50am. My husband was beside me. The nurse came in and told me that the babies had been born -- the first one at 12:25am, the second at 12:35am. I gathered all my strength and whispered to her, "Ow."
"I know it hurts, honey," she said, soothingly. "The doctor has ordered the pain medicine, but we have to wait a little bit." She left.
"Where?" I whispered to my husband. He told me that the baby had gone to the NICU, but that they would bring me Stella, if I wanted to see her. I nodded and said, "Hurts" in such a soft voice, it was almost funny. Such a small sound for such a huge pain.
When finally the morphine drip had been started, they asked whether they should bring me Stella, and I said yes, eager to hold her. They placed her thin, wrinkled body in my arms. I kissed the top of her head, and made the sign of the cross with my thumb, on her forehead. Her eyes were closed, and she was so still. A young girl introduced herself to me as the hospital chaplain and asked if I would like her to say a prayer. I nodded. She intoned this rather silly poem about how we would see Stella in the clouds, and the rain, and in the leaves of the trees (later I wondered -- why not in mustard or truck tires?). I didn't want to ever hand her back, but eventually I had to. Then they brought me two Polaroid photos -- one of Sylvie, also skinny and long-limbed, but her face was contorted with screaming. Never had I seen anyone look so beautiful when angry. The second Polaroid looked like a tangled pile of thick spaghetti. They explained that somehow Sylvie had managed to get her own umbilical cord knotted and tangled with Stella's. No one had ever seen anything like it before. They said it was a wonder she survived, and great luck that she was born when she was, and not a moment later. It was amazing that she'd received any oxygen at all through her cord.
By then it was 2am, and I knew we had to call my parents. My mom said, "This isn't funny."
"I agree," I said. "It's not a prank."
"Yes, it is," she said.
"I wish it were," I said. I finally got her to believe me.
They made me go to my room to rest before they would allow me to see Sylvie. It was nearly noon when they wheeled me to the NICU, and showed me how to scrub with iodine, all the way to my elbows. There she was, all 2lb, 7oz of her, yelling and trying to yank the respirator out of her nose with one hand and the tiny blindfold off her eyes with the other. Her nurse told me, "Girlfriend here is a fighter!"
The day after Sylvie and Stella were born, the resident who had been so incredulous in the ER, paid me a visit in my hospital room. His head hung, and he seemed really devastated.
"I have to check your wound," he said, from the door, nervous about entering.
"Come in," I said.
"I'm really sorry I didn't believe you." His eyes were pleading. "It's just that you weren't like the other ladies when they're about to have a baby. You weren't screaming, or anything..."
"I don't ever scream," I said. I could sympathize with him. When things get really bad with me, I become very calm and quiet. "What good would it do? I didn't want anybody to panic -- it might make it harder to concentrate on what they have to do."
"How could you think about other people, at a time like that?"
"I was actually only thinking about the baby."
"Well, I'm really sorry."
"It's okay. In the end, it didn't hurt her." I fought to keep the threat out of my tone. He looked so contrite, but I also knew that if things had turned out differently, forgiving him would have taken a strength from beyond me.
"But it could have..."
"Yes, you should think about that. Always listen to your patients." This remark seemed to cause him some pain, but, for the sake of his future patients, I didn't say anything to soften that blow.
As he examined my incision, he let out a low whistle. "I've never seen anything like this," he said. "What was the name of the doctor who did your surgery?"
"I don't know." I still don't, but I'll be forever grateful to that kindly man.
"It's such a clean incision! No preparation, no nothing. All that chaos! He just cut... I'm sure you can't appreciate this, but what you have here is a thing of beauty." He shook his head.
"Thanks," I said.
* * *
My next visitor was the specialist doctor, who had administered the ultra special ultrasound when I first found out that Stella had died. He stood at the foot of my bed, and looked at me for a long moment. "May I ask you a question? I'm very curious..."
He didn't have my chart in his hands, and he didn't look like he had come to do anything medical to me. "What is it?"
"After you left the hospital, the last time?" I nodded. "You had to carry your child, your dead child...?"
"I felt like a human tomb, for my own baby."
"Yes, I was also still pregnant with a living baby."
"What is that like? I can't imagine how that would feel? What you must have gone through. And now you've given birth to a child who succumbed, but you have another child who is in the NICU?" He really looked amazed and overwhelmed by my experience.
"I don't know. All I know is that it is possible to feel devastating grief and great joy at the same time, that both emotions can exist together." At the time, I remember being under the impression that perhaps everything had happened the way it had so that I could testify to this mind-boggling human truth.
He nodded and then murmured, "Different people respond different ways to terrible thing when they happen. But it seems to me that the only way to cope with them is if you have some sort of religious belief?" That statement came out as a question, filled with urgency.
I nodded. Anyone who knows me knows that I could have said so much, with an opening like that one! But I sensed that he wasn't asking for my credo at that moment. I felt much more that I was in the presence of a man of faith, and that he simply needed confirmation from me that I was aware that I was in much better hands than his. My nod seemed to be sufficient for him.
* * *
Finally, the nurses got the okay to bring me to the NICU again. That afternoon began a kind of ritual that I would repeat every day for over six weeks. The nurse caring for Sylvie would roll a lazy boy recliner up beside Sylvie's incubator. I would scrub and, after I was discharged, change into a hospital gown (of course, while I was still a patient myself, there was no need to change), with the opening in the front, and then settle myself into the recliner. The nurse would pick Sylvie up out of her plastic box -- wires, needles, tubes, and all -- and settle her on the bare skin of my chest. Then she (or he) would reposition all the wires, needles and tubes, cover her with the first blanket, with the built-in bilirubin lights, followed by another stack of blankets, over her back, so that only her tiny head would peek out the top of my gown. This whole procedure was called "kangarooing." The recliners were viewed as part of the medical equipment on the unit. Those in charge had taken seriously the research that indicates that premature babies do better, the more skin-to-skin contact they have with their mothers.
They were also attuned to the fact that medical outcomes are much better for premature babies who receive human milk. Breast pumps, on wheels, were available there, as well as in a private room, reserved only for mothers to pump. They also provided me with my own pump, to use when I wasn't there, as well as with sterilized vials for collecting and storing the milk and a special bag with frozen inserts, for transporting it. Even while Sylvie was still receiving all her nourishment through her IV, the nurses would use a long Q-tip, moistened with my milk, to swab the inside of her mouth. Later, when she was ready to try eating, her milk had to be administered through a syringe connected to a tube that would deposit it straight into her stomach -- one cc every four hours -- it was so agonizing to see her eat so little, and to want so badly to see her grow! She was weighed twice a day, and I measured my happiness in half-ounces.
The nurses had a joke (which was perhaps only a half-joke) for me, each day when I was getting ready to leave the NICU: "Check that woman's pockets!" They knew how painful it was for me to leave Sylvie, and I had observed, once, that she was small enough to fit into one of my pockets. Those nurses truly amazed me. I could be (and was!) mesmerized by their hands, which never stopped moving -- restarting a tiny heart with a brief rub and a tap, measuring out precise doses of medicine, or repositioning the oxygen source to increase a baby's saturation levels. The most breath-taking of all was when a baby needed a new IV. They would dim the lights even further, and a team of nurses would gather around. The tiny needle, which looked really no wider than a thread, was lit with a red light. No one was allowed more than three tries, and when one of the nurses succeeded, she was everyone's heroine for the day. A couple of the nurses seemed to have a special talent for it, and the others treated these special ones as though they were spiritual adepts. It was more astonishing than watching a master cellist's fingers find the precise places on the strings of his instrument, because here, even more than beauty, life itself was at stake.
The other astonishing thing about the nurses was their ability to cooperate with one another without speaking. When the baby they were caring for could be left for even five minutes, they would turn to join another nurse, helping her to complete her tasks.
But the thing about the NICU that struck me most was the extent to which human beings had been able to create these sensitive and complex machines to do the work of the human body -- and also, what poor substitutes these machines were for what the body can achieve without conscious effort. We are indeed curiously and wonderfully made!
* * *
When I returned to my own hospital room that first evening, there was a note from the hospital chaplain waiting for me on my bedside table. This was not the same chaplain as the one who had prayed over Stella, but she was also young and inexperienced. She had been assigned the task of helping me to make Stella's funeral arrangements. She had left some paperwork for me and a brief note, in which she'd written my daughter's name in quotation marks: I need you to fill out these forms, so that the morgue can release "Stella" to the funeral home. Who could have guessed that two small marks of punctuation could cause so much pain and anger? Even as I tried to explain to myself that the chaplain was young and perhaps it was just a problem she had with English usage, I wanted to strangle her. When my nurse came to check on me, she found me sobbing in my bed. Wordlessly, she brought me tissues and then went to sit in a chair in a far corner of the room. She stayed there, for two hours, while I cried. She neither spoke nor took her eyes off my face. Her own expression was one of deep sorrow. She only left after I had quieted down.
The only date that would work for Stella's funeral was April 9, which also happened to be my birthday. By then, I had been released from the hospital. We took the three older girls out of school, so that they could be present. The funeral director had refused to charge us anything, even for the headstone I'd chosen or for the white coffin, the size of a shoe box. He told me that one of his daughters had died, before birth, and he would never charge for the funeral of a baby. He brought a dozen white roses to the funeral. Our Associate Pastor came to preside, bringing flowers as well, in case we'd forgotten. He performed the funeral liturgy in the cemetery chapel. When he sprinkled Stella's coffin with holy water, he told us that the Church recognizes three forms of Baptism: by water, by blood (the martyrs), and by desire. He explained that Stella had already received Baptism of desire, through our desire as parents -- because we had clearly intended to have her baptized. He explained that sprinkling her coffin was in memory of her Baptism. The funeral liturgy was so beautiful and healing. Rather than bringing us down, it made us joyful.
It was raining, and the cemetery was muddy that day. I wanted to stay to watch the burial, so my husband brought the girls back home. Our priest stayed with me, though, holding a big black umbrella over my head. As we stood there, I looked at the other graves near Stella's. Just behind her, and a little to the left, there was a large headstone. From where I stood, I could read the name carved into the granite: Francis Xavier Cabrini. What a gift that was to me! Such a great saint of the Church, who would be so near to Stella's final resting place. I entrusted my little girl to her special care, right then and there.
* * *
I was not allowed to drive a car for six weeks after my surgery. During those weeks, I always had a ride to and from the hospital (45 minutes each way), so that I could "kangaroo" with Sylvie for several hours each day; our neighbors, or my mother, cooked us dinner every night and cared so well for our older children after school, so that it was a holiday for them, and not a time of abandonment and sadness.
* * *
Just to explain the image at the beginning of this post: My friend Anna, one year earlier, had painted a series of pictures, one each day, during the month of April, 2001. I fell so in love with this series that I wanted to buy it from her, but I could not afford to buy all the pictures at once. I had made a deal with her that I would buy them, one by one, as I had the money. We were due to meet on April 2, so that I could pay her for the tenth picture in the series, so I called her from the hospital and left a message on her machine explaining what had happened and canceling our meeting. She rang the phone at my hospital bedside that evening and told me that she would give me the remaining twenty-one pictures, no charge. When I protested, she refused to listen to me. She told me that the pictures weren't hers to sell. They were mine.
* * *
Sylvie's pulmonologist and her retinologist were surprised by her rate of recovery. They each said they had never seen anything like it. Perhaps her recovery can be explained by the quality of care she received in the NICU -- plus all those hours of kangarooing and the breast milk that made up her whole diet for her first year of life. Or perhaps she is particularly blessed because she has her own patron saint, who is her mirror image, in heaven. I am grateful for all the gratuitous goodness that so many people, even strangers, showed us during our difficult time. But I also want to thank Saint Francis Xavier Cabrini and say, Keep looking out for my Stella, please.