A childless aunt’s worst nightmare.
My baby niece died.
What more is there to say? A lot, but how much of the rest really matters?
My sister gave birth to a beautiful little baby girl on December 20, 2019. Niece-y was my sister’s highly anticipated second child, after her three-year-old son. Ever since the day he was born Munchkin Nephew has been the apple of his Auntie’s eye, the person I loved most in the world. So, when my sister told me in May of 2019 that we were going to have a Christmas baby (or as she put it, “another tiny human”), I knew my heart was about to get a whole lot bigger. When Munchkin Nephew was born, it added a whole new dimension to my life and to who I was. Becoming an aunt or uncle is not as paradigm-shifting as becoming a parent, of course, but it does change your life to some degree. With a new generation in the family begun, you’re no longer one of “the kids,” and now you have someone looking up to you.
Before we go any further, I would like to ensure that the subtitle of this piece does not rub anyone the wrong way. The loss of a niece or nephew is catastrophic whether you have children of your own or not; however, I think any parent reading this would agree that the loss of one’s own child is more traumatic. For someone like me, who is very maternal but does not have her own children (and does not ever intend to have her own children ) this is the closest thing you can get to losing your own child, and it does not get any worse than this.
When Niece-y finally arrived, I could not wait to hold her, and cuddle her, and read her stories and rock her to sleep while Munchkin Nephew read to us from his extensive library. You know, Auntie things.
Then came the call that would change everything, now and forever. Our Christmas baby would not be home for Christmas. If I live to be a hundred years old, I will never forget the sound of my sister sobbing into the phone, telling me that Niece-y was not at the small-town hospital where she had been born, minutes away from their home. She was at the top children’s hospital in the country — among the most renowned in the world — in critical condition. What had initially looked like a totally manageable case of neonatal hypoglycemia had in fact been a portent of much worse things to come. Niece-y had been having numerous seizures, she was intubated as she could not properly breathe on her own, and the doctors feared she may have brain damage in various parts of her brain. Sister and BIL had been told by the elite squad in the NICU that they were going to do everything they could for Niece-y, but that they had to be prepared that she may not make it. Even if she did, should could be severely disabled, and the kind of life she would live was a mystery.
In those first moments I was ready to grab the full bottle of clonazepam in my purse and swallow the entire thing; my own certain death seemed preferable to living with the possible death of this little girl my family already loved so much. But suicidal ideation is something I’ve dealt with for most of my life, and as usual I banished it, because I knew my sister needed me. I needed to be strong for her and my little niece, to protect them and encourage them, the way sisters and Aunties are supposed to. I told my sister to trust the medical professionals at that most elite of hospitals, reminding her that people come quite literally from Timbuktu to have their children receive the best possible care. I also reminded her that children are resilient in a way that adults can only dream of, and that the brain is plastic and can do extraordinary things to right itself.
I asked her if she wanted me to come over to her in-laws’ house where she and BIL were staying, his parents being at their house with Munchkin Nephew. She told that she was fine, and that I should go home and sleep and go about my Christmas plans. Her general standing order to the immediate family was to go about our daily lives as normally as possible, and she would summon us when required. After telling her I loved her and to call me if she needed to talk things out, I immediately called my parents and sobbed hysterically to my mother. She told me to let it all out to her, but to be my strongest and most resilient self for my sister and her little family.
The first of my many visits to the NICU was the hardest one of all. This hospital is quite a welcoming place for a hospital, and it has a very different vibe from regular hospitals. My sister suitably nick-named the NICU Fort Knox, because you have to announce yourself on an intercom and then be deemed worthy of admission. When I finally saw Niece-y in the warm little incubator, my heart split in two and did backflips in opposite directions. On the one hand I was so happy to finally get to be with her, and talk to her, and hold her little hand and tickle her tiny feet which were sticking out from her blankets. On the other, seeing her hooked up to CPAP, an EEG, and a myriad of other medical equipment was tormenting. I wanted so badly to pick her up and cuddle her the way I had with Munchkin Nephew the day he was born, to walk her around and soothe her.
Despite my anguish, I talked to her and cooed over her as if nothing were out of the ordinary. I told her that Auntie had been so sad and lonely not seeing her, tucking her feet into the blankets as she wiggled them out, and telling her how proud I was of her for being so brave. Of course, I went all Helicopter Aunt even that first day, when one of the neurologists on staff came in with two young fellows to speak to my sister and examine Niece-y. They poked and prodded her and stretched out her limbs, testing her range of motion and her reflexes, and I probably looked like I was trying to shoot laser death rays out of my eyes.
The weeks Niece-y spent in the hospital were an agonizing mix of good days and bad days for our little angel. Even as the news got more and more grim, I refused to give up hope, and told my sister to do the same. As painful as it was to see this sweet little baby so unwell and hooked up to myriad medical equipment, I spent as much Auntie-Niece time with her as possible. Whatever God was going to grant us, I would give thanks for it and make the most of it. With my office being quite close to the hospital, I was able to visit at lunchtime if I wanted, but my favourite times were after the workday was done, when I could sit with Niece-y until visiting hours were over. I read books to her, her favourite of which seemed to be Green Eggs and Ham, by Dr. Seuss, which was one of my sister’s and I’s most loved books as children. She would hold my fingers, and I would tickle her soft chubby little arms, and play This Little Piggy on her little toes. Of course, one day when Auntie had temerity to tickle her foot when she was having tummy time, Miss Niece-y kicked me away in protest.
She was adored by the nurses who worked around the clock to keep her comfortable and well, and I could tell that for these remarkable people, what they do is more than a job, it’s a calling. Even as the doctors give my sister and brother-in-law worse and worse news about Niece-y’s prognosis, the nurses continued to be positive and upbeat, and I took my cues from them. In between reading her stories and saying prayers over her, I would talk to Niece-y all about our family, and all our plans for when she came home. I told her how excited her brother was to have a little sister, and that we would all have story time before bed, and that he could read her stories now, too (the easy ones). I told her all about her Grandma and Grandpa’ country house where there’s a pond with fishies and little frogs, and about our family dogs, A and B. B is a little bit shy, I told Niece-y, so you have to give her time to warm up to, but A just wants someone to throw the ball and to pet her.
I told her she had to get better before Auntie goes to Prague in May, so that she and Munchkin Nephew could talk to Auntie on FaceTime from the Charles Bridge, and Prague Castle. I told her all about Vienna, where I had gone a couple of months before while waiting for her to arrive. I told her all about the palaces, and Mozart’s house, and St. Stephen’s Cathedral, the amazing 900-year-old cathedral, and all the coffee and cakes. Auntie was going to take her and Munchkin Nephew to see it all one day. All the things I would have done if she had been home in her crib where she belonged.
My last visit with my niece came a few days before she died, one day before her parents were told that there was nothing more that could be done for her. I am glad that I did not know that it would be my last visit, because if I had, I do not think I could have left the hospital on my own two feet and made it home alive. It was on that visit that I finally go to hold her and snuggle her in the rocking chair. The nurse got me settled into the chair, put a cushion under my arm for support, and carefully handed Niece-y to me, taking care to keep her respirator in place. I sang some favourite hymns to her, as well as “Twinkle, Twinkle, Little Star” (a favourite of her brother’s) and “You Are My Sunshine.” I rocked her and soothed her, and by the time visiting hours were over, she was asleep.
The next day, my sister and brother-in-law had The Talk with the medical team who had fought so hard for their little girl. Faced with the knowledge that their daughter could not survive on her own without life support, they made the decision no parent should ever, ever, EVER have to make. The time had come to make her palliative and stop extraordinary measures. When my sister told me there would be no more visiting, because The Talk had been had, I begged God to take me with her. It was an irrational internal scream, but in that moment, it was very real. I had asked Him so many times to please take me instead; if He was determined to hand my family a tragic loss, make it the loss of me. I’m an adult, and a sinner, and I deserve death, but an innocent baby does not.
This kind of spiritual flailing is probably familiar to anyone of strong religious faith, but I think we would all agree that it is counterproductive to everything that is important. God is the author of Life, I reminded myself, and every day that I wake up is a day that He wants me to live. And even as death takes away loved ones, we cannot forget or neglect those who are still alive. My sister needed me to be strong, and I still had my nephew and the rest of my family and friends. Even in the moments when I do not feel particularly attached to being alive, I am attached to them and determined not to cause them any unnecessary pain.
This is the dark places your mind goes when your sibling is watching their child die.
And there is nothing you can do to fix it, for them or the child.
Being the little fighter she was, Niece-y held on for a couple of days before finally taking flight. She died in the arms of her loving, devoted parents, who had loved her enough to set her free.
The day I found out she was going to die was the worst day of my life, so far. Not the day she died, as you might expect. Having clung to hope as much as I could, finding out that the brilliant people caring for her were at the end of what they could do was a brutal body blow. When she finally died, heartbreak was mixed with a sense of relief that the worst was over; she was no longer suffering, and as a family we could now begin the grieving process in earnest.
People keep asking me how I’m doing, and I keep giving them the same answer: I’m having good hours and bad hours. I’m not even at the point where I can say I’m having good days and bad days. I’m sure that one day I’ll get there, but I’m not rushing myself by any means. Not only did I lose my niece, but I also lost my littlest friend. It does not take long to bond with a baby, and all the visits I had with Niece-y formed a friendship, as strange as that may seem. My sister has lost a child, and I can’t do anything about it. My parents have lost their granddaughter, and I can’t ease their pain. My nephew will grow up knowing he had a sister who never came home, and I can’t fix that for him.
My faith continues to sustain me, as it teaches me that death is only temporary, that Christ has ultimately conquered death, and all who die live on thanks to His death and resurrection. Death is not the end of a person’s existence, merely the next chapter of it, and the line between the living and the dead is much thinner than the world would have us believe. Although I hope to live to a great age, to see my nephew grow and watch the world unfold however it will, when death does come for me, he will not come as an enemy. He has already taken a life dearer to me than my own, so what do I have to be afraid of? Besides, he is not the master of our souls, only the vessel that takes us to Him who is the author of life eternal. And when that time comes, I will throw myself upon the mercy of God for my myriad sins, and by His grace and love for mankind, see my littlest friend again.
O Death, where is thy sting? O Hell, where is thy victory? Christ is risen, and thou are overthrown. Christ is risen, and the demons are fallen. Christ is risen, and the angels rejoice. Christ is risen, and life reigns. Christ is risen, and not one dead remains in the tomb. For Christ, being risen from the dead, is become the first fruits of those who have fallen asleep. To Him be glory and dominion unto ages of ages. Amen.
- Holy Paschal Sermon of St. John Chrysostom