Friday, October 3, 2014


Dear Ellie,

I still visit a lot of the online preemie communities that I was a part of back when you were in the hospital.  Many people helped me back then, and I was hoping I could return the favor as new parents passed through in need of support.  At any one time, there is always 10 stories unfolding.  Some of which end happily, some ambiguously, some sadly.  Each time that I see one that ends sadly, I think back to when we thought you would be born before viability.  I remember preparing my mind for each stage of grief, and at the very end of that maturing grief, there was a sort of beauty glowing behind that loss.

There is one baby that I've been following.  He's lingered so long on "the edge" that I doubt he will make it.  It's bothered me, to see him fight so hard for nothing.  But is it for nothing, even if he perishes?  I wonder whether a life, however short, can still have meaning.  Can still be seen brightly in that short moment of time it exists, like an ember that rises above the messy flame of life that inhabits the Earth.

Below is a poem I started to write months ago after talking to a friend about a baby she had lost.  I didn't know quite how to finish it until today.


The Ember

A fire flickers, burning bright,
Gasping air and coughing life,
Amid that flame, an ember is born,
It flickers dimly, then takes form.

It's cast above by drafts of heat,
Buoyed by love, and tears, and grief, 
To grace the sky it travels far, 
To dwell so brief among the stars.

For seconds short, constellations change,
One star added, to an ageless range,
An immortal moment, moving fast,
Soon to live, forever, amid the past.

Its glory spent, its fire gone,
It pops just once in forlorn song,
Accepting death, its time is yet,
It circles down in pirouettes,

To rejoin, forever, the flame.


  1. Does every life however short has a meaning? This is a highly philosophical question. When I lost my twins, one of my friend said, God has selected you for helping those two lives finish their duty in this world. It is a predetermined fate that they have to come through you and go back. They finish their life cycle in this way. Hindus believe that there are 7 lives before you get liberated from the birth-death cycle. Don't ask me how much I believe all this. But, to think in this way gives some solace for my soul. I am a scientist and when I think like a pucca scientist, using only my brain, I would decide that it is not wise to try to save a baby who is too premature to survive healthily. If some intervention could save life but decrease the quality of a life too much, I wouldn't want that to happen. But, when I use my heart, my emotions, when I think as a mother I would give my LO every little chance to survive. Will I do it irrespective of the quality of life my little one would have? Still I am struggling to get an answer! When I see children like Ellie who are happy and healthy , I feel, every little one must be offered a chance to fight for their existence. But, when I see crippled children, my heart aches. Isn't it a selfish thing to do so just because we have the technology to save a life irrespective of the side-effects and the consequences? What right we have to make a life suffer? Aren't we supposed to use our brain and not our heart at such moments? If I get an incurable cancer, as an adult, would I chose to die peacefully or go through chemotherapy and such hell just to prolong my life just for few more years?

    1. Manju, if you ever read the story I wrote Ellie--- The Man at the Edge of the World--- you'll probably guess that I believe we make our own meaning in life. So to me, when a life blinks into existence for a short time and then blinks out, that life lives on in the way it has touched our lives. That "once life" may not have a mind of its own, but it has inspired the growth of neurons in many others that never would have grown quite the same way. I think, perhaps, your twins have quite literally nestled into a thousand different heads, rather than merely inhabiting just two of their own. I think about your two little embers often. They have shaped my brain in a special way, the path of my life now deflected in some unique direction it would not have followed, before. They are a part of me. Perhaps, even, they live on in me, and so many other people as well. And besides, what are we little life forms anyway but little eddies of atoms, little whirlpools, spinning briefly about in the cosmic stream before returning to the downward tow of entropy.

    2. As for the decision to let micro preemie live or let it go... We were faced with that difficult decision, whether to save Ellie or not. It looked like, at 22 weeks, she was going to be born. We knew that we wouldn't intervene at 22 weeks, because it would be utterly futile and cruel. Were it at 23? Again, perhaps not, if she emerged mangled and beyond hope. But would we try to save her at 24? Well... that's when she was born, and that's when I made the most selfish decision of my life. We both decided that we wanted the doctors to do everything they possibly could for her. Some people might wonder why I consider this selfish. Well, like you, I have a sentimental side, but also a ruthlessly rational side. And the unyielding rational side doesn't let the sentimental side infect its calculus. My rational side reminded me that we live in a world of finite resources. I'm aware of the misery that exists elsewhere in the world, and I'm aware that if the 2 million dollars spent on Ellie were spent instead on anti-malaria medication, it would very well save the lives of many, many more children elsewhere. Not just one. Why is my grief any more powerful, any more meaningful than a father who holds his child, mortally ill from some tropical disease that could be cured by a vial of $100 medication? The answer is: it isn't. My happiness, my hopes are not a thousand times more valuable than some other person's, elsewhere in the world. I remember feeling strangely disgusted by human society. How it would spend so much on one of its own when it could instead save a thousand that WEREN'T it's own. And at the same time, I was also so glad. It felt a little bit like I was a criminal or adulterer who was aware of their own villainy, but had accepted their flaws as part of their character.

      And this concept played out in so many different ways, in my head. For instance, Ellie's NICU was located in a rather impoverished area, and I often wondered, while there, how many scholarships for bright, disadvantaged children 2 million dollars could buy... I remember driving through the ghetto, looking out occasionally at children with intelligent, clever faces. Children that would never have a chance to flex their intellect because of the circumstances they were born into. Or perhaps they might if I could simply spin away the money wrapped up in just half day of Ellie's NICU stay and send one of those children to a nice school that would change their life.

      Of course there is no mechanism to actually move that 2 million dollars to a scholarship fund or to malaria medication. But if there were... I think I might still be selfish. And seeing the opportunity cost of that treasure makes me feel strangely guilty. As though I have devoured the happiness and dreams of 100 other fathers so that I could have mine. How strange, how backward that my selfish decision was driven by the purest, the rawest kind of love. There has always been a lot of love in my life, but my rational half has always been suspicious of it. It can sometimes make us do viceful things, and then convince us they are virtuous.

      I was quite pessimistic throughout Ellie's time in the NICU. I knew the odds were against her and part of me was certain that she would be on the wrong side of those odds. I look at her now, how well that she appears, and I feel like I somehow cheated. I feel like, because of my selfish decision, I don't deserve a baby like Ellie. But maybe it has nothing to do with what I deserve. Maybe, it has to do with what Ellie deserves.

    3. Sometimes I find it so difficult to understand certain things you say :) Might be I need some more maturity Dana ( the first part of your comment)

      The second part of your comment regarding spending so much for a baby at 24 weeks gestation is totally a new view for me. I have never thought that way! You really are a deep thinker and more than that you are gifted with a talent to express it coherently.

      All I can say is, "all is fair in love". This world is ofcourse unfair and only stupid explanation which comes closer to explain all this is "karma" :)

    4. Sometimes I don't make sense to myself either when I'm up at 2 in the morning hammering away at a keyboard :-)

      As for what is fair... I take comfort, strangely, with the idea that nothing happens for any greater reason. If a person does something terrible to you, it stands to reason that you would be angry with them. Seething. But if a hurricane or an earthquake were to take something from you? How you can blame a dispassionate natural event? You can't, so it spares you a lot of teeth gnashing and anger.

  2. Hi! I stated reading your blog when I was sitting in Johns Hopkins for 6 weeks after Pprom. Prior to that our Ella had been given a death sentence at 17 weeks when they discovered I had no amniotic fluid due to a freak formation of my sac. I under went experimental infusions at Johns Hopkins to help give her a change.
    While I was waiting for her to be born I read blogs like yours to help me prepare for the good and bad.
    I have been following the story you referred to above and have been so shaken by it. We all say have hope, but we know deep down hope can't give everyone a happy ending. It's almost like I have a case of survivors guilt. While our little Ella still has challenge ahead, she beat the odds that were in front of her. Is hard to wrap your head around why my baby survived and others don't. I'm not sure what my whole comment was about except to say William's story has me shaken too.

    1. What an intriguing procedure they gave you. Quite a fortunately improbable solution. I'm very glad that things appear to be going considerably better than the doctors expected. I had that feeling, too. Ellie was supposed to be born at 22 weeks. A day or two after she'd been examined and told that everything with the pregnancy was A okay, she suddenly dialated. They were waiting for Ellie to be born at any moment, and I remember looking ahead at all of those terrible odds. But one day became two, then three, then eventually 14. Very much so, I know the feeling of survivor's guilt, too. We saw a lot of babies come into the NICU--- babies that were born a lot later than she was--- yet they either didn't make it out or did so with considerably greater frailties. The other side of survivor's guilt is that you are made grateful, though. There are plenty of reasons to be bitter about your child being born so early and subjected to so many perils, but I'm glad that I feel grateful far more often.