waiting at the operating room door

waiting at the operating room door

When they wheeled Yahayra out of the operating room, her tiny, 4 pound, 10 ounce baby lay on her chest, bleating like a newborn lamb. Her friends and family-- numbering close to 20-- were gathered around the door of the surgical suite, and when baby Zady let out her first audible cry, the adults all gasped in unison and broke into enormous smiles. Laughter and coos began to echo down the hallway as mother and baby were wheeled down to a postpartum room, and excited chatter began to replace the hushed silence that preceded those operating room doors opening. What would follow was truly magical. 

I first met Yahayra nearly a month before Zady’s birth. At that time, she was seven months pregnant with a baby girl she knew would not survive. It was the first time I’d ever met a mother during her pregnancy with a baby who would certainly pass away. When Yahayra had gone for her 20 week anatomy scan, the ultrasound had shown that her baby girl suffered from anencephaly, a rare neural tube defect where a major portion of the brain fails to grow. Babies with anencephaly sometimes live for a short time, but they also frequently pass away in utero or die during the delivery. Mothers in this situation are always given the option to medically interrupt the pregnancy, either through early induction, or a medical termination through a surgical procedure. Because babies with this diagnosis can not survive, this option is often encouraged by health care providers. However, Yahayra felt compelled to spend as much time as she possibly could with her daughter.  So onward she marched, her belly expanding-- patiently explaining to her two older children and numerous family members about Zady’s unique condition.                      

Over the weeks as I met with Yahayra we spoke of her fierce love for Zady, and we laughed together as we watched little Zady’s feet poke Yahayra’s expanding belly. We shared the hope that Zady would be born alive and we would all get to spend some time with her before she died. During our visits we also made plans for how we would capture as much of Zady’s life as we could. Right away, we made plans for a belly cast (thanks to Karen Kurtigan) and prenatal photographs (Thank you, Erin Long). We brought Yahayra roses, her favorite flower, and helped her to create a birth plan that felt just right for her. Yahayra knew that when Zady was born, her goal was for a peaceful time together. Sadly, there was no way to save Zady’s life-- her brain was not formed enough to sustain her for the long term. It was Yahayra’s goal to hold her daughter and be with her while she died peacefully. A sad, dreadful, and awfully brave goal.                                     

Yahayra was scheduled to be induced on Monday, April 4, at 36 weeks gestation. I can hardly imagine what it was like for her to anticipate that date. Her body was essentially keeping Zady alive and stable-- delivering to her all the nutrients and oxygen she needed. There was no telling what would happen to Zady when she was born, if she even survived the birth. For Yahayra, to deliver her baby was to hasten her death-- an impossible predicament. Yet she also knew that for Zady’s birth to be induced while she was still alive increased the probability that she would be able to spend time alive in her mother’s arms. So onward Yahayra marched, hands clasped around her ever-growing belly, facing an impossible future yet head held high. 

Yahayra smiling through labor

Yahayra smiling through labor

Yahayra’s water broke early in the morning of Sunday, April 3. It was as if her body knew it was time-- she had been in countdown mode for so long, and she was ready to go. She came to the birth center and was greeted by a warm, supportive staff who had been anticipating and preparing for Zady’s birth for weeks. They settled her into the largest birthing suite, right at the end of the hall, and began to wait. 

The people streamed in. By the time I arrived at 1 pm, the room was full. Husbands, wives, uncles, aunts, cousins, grandparents, and friends surrounded the laboring Yahayra and Gilbert, Zady’s father. A baby slept in the corner. A few small children darted in and out of the room. I entered with photographer Erin Long, who had also developed a strong friendship with Yahayra during her pregnancy. The two of us came in and were instantly wary of the apparent chaos in the room. There was Yahayra, in hard labor with a baby who would not live, and we worried that all of these visitors might just be too overwhelming. In hindsight, I cringe with embarrassment at this thought: this opinion was me looking at the situation through my own eyes. Later, I would learn that all these people were a gift. Erin and I gave Yahayra hugs and Erin took some labor photographs, and Yahayra welcomed us to join the crowd, to stay and join the wait for Zady’s arrival. We settled in and waited.

A family photo taken during labor

A family photo taken during labor

While the labor had begun on its own, for a variety of reasons in the early evening the midwives determine that the best course of action was to deliver Zady by c-section. I breathed a sigh of relief myself. Watching this woman labor with enormous physical pain and knowing the emotional pain that would follow was exhausting. I wanted her pain to stop, I wanted her daughter to be delivered safely and alive into her arms, and I wanted her anxiety about whether or not Zady would survive the birth to be answered. Erin and I stepped out of the room as Yahayra was prepped for her surgery. Her family was given another hospital room to use as a waiting area. 

In our own little room, Erin and I talked candidly to each other about how important we thought it would be that Yahayra and Gilbert would have some time alone with Zady in the surgical suite. We felt that given the volume of guests at the birth, and given the emotional intensity of meeting Zady, the quiet moment of birth for just the two of them might be preferable. Erin trustingly passed off her professional camera to an assisting midwife to photograph in the surgical suite, and then we sat back and waited. 

Not too long after, the midwife re-entered. She held the camera in her hand, her expression grave. Zady had been born, and she was alive. She had a heartbeat and was blowing some bubbles, she said. She didn’t think she’d last very long. Erin pushed the camera back at her. “Please, then. Go back and take some more photos of her while she’s alive”. The midwife left the room.

When she returned, the news was better: Zady was pinking up, she was making noise. Yahayra was stitched up and they would be moving her back to her room in a few minutes. We were invited to the hallway to greet her. The family gathered around. The doors opened. 

This brings us back to the beginning of our story, where Zady and Yahayra emerged from the surgical suite. Yahayra was beaming. The family all leaned in, craning their necks to catch a glimpse of the tiny, swaddled Zady. The two were wheeled down the hall and the family followed. The doors to the postpartum room opened and everyone streamed in and surrounded the bed. Yahayra lay there, her long, red hair surrounding her on the pillow, her icy blue eyes sparkling. She smiled down at her darling little girl, a petite, dark haired beauty wrapped in a blanket. Zady opened her mouth and let out a tiny cry, like a kitten. Everyone gasped, and laughed, and cried. It was the most adorable noise any of us had ever heard. Yahayra leaned down and kissed Zady’s little face. The family gathered quietly and respectfully around the bed, their faces glowing with pride and love. Everyone was taking photographs and doing the things you’d expect people to be doing-- whispering about how adorable the baby was, cooing when she made her sweet noises, and reaching out and touching her soft newborn skin. Yahayra raised her face to her family and said, “I know you all want to hold her, but right now the most important thing for her is to be with me”. No truer words were spoken.                     

I have rarely witnessed such beauty as that time around Yahayra and Zady, when dozens of people gathered around this baby whose life was limited and witnessed her beauty and her reality so honestly and openly. Suddenly, all these people-- who I had somehow, for some unexplainable reason, feared-- were a gift. They were all there as part of Zady’s family, as part of Yahayra’s community. They were gathered together in recognition of Zady’s life and to honor her parents during the short time they would actively parent her. What followed was an experience so authentic, so real, it made me think that as an Empty Arms companion I ought to have planned it thinking ahead to what would happen. Zady was absolutely confirmed and welcomed into a circle of love. Yahayra was confirmed and validated as a mother of three, Zady was confirmed as a sister, and her siblings were able to meet and interact with her immediately. In fact, they were able to help to dress Zady, diaper her, and interact with her just as siblings would.           

Yahayra with her children 

Yahayra with her children 

Cousins and aunts, uncles and brothers, and the pastor from Yahayra’s church gathered around, hearing Zady’s voice, telling her parents how beautiful she was, and filling the room with joy. There was not a hint of grief, anticipatory or otherwise, in the room during that time. Zady was perfect and beautiful in everyone’s eyes. They loved her for who she was, as she was.                        

Everyone gave their time, their presence, and their love to Yahayra, Gilbert, and Zady, and then slowly, one by one, they kissed Zady’s tiny face and said goodbye, just after midnight. Nobody knew how long she would live for. They all hoped for more time.              

Yahayra and Gilbert had three more hours with their darling girl, just the three of them. They changed her clothes, they held her some more, they slept some together. At just past three, Yahayra’s dearest pre-natal nurse, Megan, the only one who hadn’t yet met Zady, came on shift. She came into the room to give Yahayra her pain medication, and Yahayra woke up and excitedly shared her beautiful newborn girl with Megan. It seemed a miracle that Zady was actually there, that she had been able to experience everything that her mother had waited so long for her to experience. She had been held, loved, and cherished. She had been met by family, shared, and blessed. Everyone who had waited for her, who had hoped she would live to meet them, had gotten their chance. 

And then, just like that, quietly and peacefully, Zady passed on. In her mother’s arms, right there, warmly and softly. I was not present for this moment, but I have an image in my mind of her little soul rising from her body, contentedly rising to another place, having fulfilled her time here on earth. Yes, her time was much too short. Yes, her parents desperately wanted more time. But the experience she had was beyond value, and the sweet, love-filled memories that her family will carry of her will last forever. 

I have companioned with many families over the years, but I have never had the opportunity to build a relationship with a mother the way I did with Yahayra, as our friendship grew in anticipation of Zady’s birth and death. Being part of her birth experience, and being able to witness Zady’s life and her time with her family was a privilege beyond words. I feel so blessed having been able to know Zady, and to be part of her short life. I feel so grateful for having been able to feel her warm cheek beneath my palm, for having been able to laugh along with her family when she let out her beautiful cries, and to be able to shed authentic, love-filled tears after her death. Little Zady, whose full name is Zadhayra, taught me so much. I will always remember her. Her life was short,  but her mother and her taught me so much about patience, and bravery, and love. 

Everything felt sacred.

The night was warm and dark as we pulled out from downtown Northampton, heading up the highway. It was just past 2 in the morning, less than 30 minutes since I’d gotten the call from the hospital. A baby had been born still, and they wanted photographs as soon as possible. I made the only call I needed to make, and within minutes both Erin and I were heading to a meeting spot in Northampton, ready to do the work that needed to be done.

Erin and I have known each other for more than eight years, our friendship having been born with the birth and death of Erin’s first daughter, Birdie. That March of 2007 Erin called for support not quite three weeks after Birdie’s passing, as I was decorating my own living daughter’s first birthday cake. She was among the first mothers that I sat with in early grief. I was instantly drawn to Erin’s passion, her intimate, gentle love for her daughter, and her fierce understanding that she would somehow honor Birdie’s memory. We were drawn together by our first daughters, shadow girls who would somehow live with us forever, even when they had left us physically. A quiet, wise friendship was born. For each, the other possessed an experience and understanding that every other loving, caring person in our lives fortunately lacked. We knew what it was like to fall in love, give birth, and say goodbye. We knew what it meant to rebuild piece by piece, day by day, tear by tear. We both knew the joy, euphoria, and incredible risk of the subsequent children we were both fortunate enough to welcome.

When the idea began to percolate to incorporate our own team of photographers for Empty Arms, modeled after the incredible work of Now I Lay Me Down to Sleep, I knew that Erin would be a critical player on our team. It was not for many years after Birdie’s birth that I learned of Erin’s incredible skill as an artist, and at that same time she began to muse that eventually, when she was ready, she knew that photography was the way she would transform her love for Birdie into a gift for someone else. Erin herself had been given the gift of gorgeous photographs of Birdie, taken by a NILMDTS photographer who drove in from Worcester. Knowing how difficult it can be to access photographers in our area, she knew this would be her calling. And indeed, it is.

Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 

Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 

While our photography program is still in its infancy and development, what we can accomplish for a family is already life changing. And so it was, that on a dark, wet, warm Tuesday morning, Erin and I drove up the highway to meet a newborn baby. We entered his room, and his family’s life, at just past three. The lights were low, and everyone’s voices were quiet as we entered and introduced ourselves. It was late, and everyone was exhausted, overwhelmed, and in shock. Our goal was to capture this moment, to photograph this tiny piece of time that would live forever in this mother and father’s memory, that would become the most tangible piece of their son’s life story.

Entering into this space is different every time. When a person’s life falls apart so catastrophically in such a short period of time, there is a feeling of being lifted from the earth as we know it. Time stops, and there is a lull as one reconsiders their past, present and future. The past, when they expected so much. Their present, where they are faced with this beautiful, breathtaking, agonizing love for a child who cannot stay. And their future, which they cannot bear to face. For each person, they are reduced to the core of who they are: they follow base instincts and are guided by those around them to create an interaction. They are in shock, in this strange, timeless void, and there is a wide range of reactions. Some people are so frozen with terror and grief, they can hardly interact with their baby. They are limited by the intensity of this moment, and everything feels too overwhelming and sad. Some people are full of pragmatic questions and thoughts, their minds racing with memories of the pregnancies, what-ifs from the past few days or weeks, and fears and anxieties about what the future might hold. And then there are the others, who are somehow able to sit quietly right in the moment and experience their baby for who he is, what he is, right now. This was what we found that night.

A mother lay holding her newborn son. He had died the day before, and she had labored all afternoon and into the night. He was beautiful, fair, with blond hair and soft, perfect skin. She cradled him in her arms, and her thumb stroked his cheek. The light was low, and her eyes barely lifted from her son’s face upon our arrival. She was here, in this moment, taking in this little boy in the time she would have. We introduced ourselves and our role, and our work, but it soon became easily apparent what this evening would bring. We were but witnesses to a mother’s love, and we would drink in this time.

Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 

Pictured here is Emma Elizabeth Dias, daughter of Jon and Kate Dias.  Emma was also photographed by Erin Long during a companion visit last December. We thank Jon and Kate for allowing us to share Emma's photograph here so that you can see the power of a beautifully taken photograph and appreciate for yourself what a gift a photo like this is to a bereaved family. 

We moved silently, quietly. Erin had her camera, and I helped the mother find the perfect angles, the perfect experiences with her son. We unwrapped him from his blankets and laid him on her bare chest, her skin warming his newborn self as her cheek rested on his tiny, soft cap of hair. We focused on hands, ears, toes, and knees. His father, who had been sleeping, awoke and joined mother and son in the bed. They created a perfect triangle, two heads together gazing down at their baby boy. Erin captured the mother’s fingers on the baby’s, the dad’s hand on baby’s tiny back. When we spoke, it was quiet and direct. The baby was diapered, dressed, and held some more. He was swaddled, and unswaddled, kissed, cuddled, and stroked. The two parents surrounded their child with their love. We admired each and every part of him, as any people would in the presence of a newborn. Our voices were mesmerized, quiet, and slow. Everything felt sacred.

For every time I have done this work, there is a crystal-clear moment when I realize our work is done. That this family needs the room to themselves, that it’s time for us to go. Certainly hundreds upon hundreds of photographs had been taken. We had captured everything that this mother and father hoped to capture. At just before five, it was time. I spoke, and told them we would take a few more shots of the three of them together, and leave them to be a family. They nodded, and we did just that.

In the end, Erin and I arrived back in Northampton at first light. Our car ride back was quiet and thoughtful, but infused with one strong knowledge: what we could give this family, in that moment, was beyond value. Here, in the dark of night, two mothers who knew this grief had entered their world. We had affirmed their son’s perfection, his reality, we had witnessed his life and existence. We had called him by name, touched his smooth skin, stroked his downy hair. We had quietly respected the beauty of this moment, of this tiny child and his two parents, and Erin had captured what she could with her art.

A photographer who works for NILMDTS once told me, “People always ask me, ‘How can you do that work?’ And I tell them, ‘After you’ve done it, the question becomes how could you NOT?’” This is the feeling I am left with. Whenever I am blessed to enter a family’s space in this situation, to meet their child, and help them say hello and goodbye, I feel an overwhelming sense of privilege. Is it difficult? Of course. Is it sad? Without doubt, every single time. But each time, I am filled to the brim with a sense of having offered something truly from my heart. There is nothing like it. I am so grateful to Erin Long for giving herself and her work to these families. I know she will smile quietly reading this, knowing that what she gives to others comes truly from her heart and feels like the most important work on earth. And for each family, in each moment that she captures, it actually is.