Tuesday, April 16, 2013

Just another day at the office

He has creamy pink skin.  Rosebud lips. Ten tiny toes, ten tiny fingers. A covering of peach-fuzz hair on his head. He is loved.  His room is waiting at home for him.  He is 7 and a half pounds of glorious perfection.  

Except for the brain damage.

She's standing at her son's beside gazing down at him. She is sore and slow and tired, with her swollen post-partum belly covered in sweats.  Her husband stands stoic beside her.  They don't know what went wrong.  He was fine, fine, fine on ultrasound just days ago. They have just finished a conversation with the nurse practitioner covering her son's care that day.  It's not good, but it's not the WORST either.  He's got a chance. We'll have to see how he does once we finish the cooling protocol and do an MRI.  Then the real waiting begins. It might be years before we know what he's going to be like.  Able?  Disable? Walking?  Talking?  Deaf?  Blind?  Who knows.  We left our crystal ball at home today.

She's standing at her son's beside gazing down at him.  He is still.  So still.  He has tubes and wires coming out of every which way.  The amount of technology surrounding his bedside looks like it could control a missile and is equally formidable to anyone who doesn't know it's purpose. His nurse (my colleague), offers his mom the chance to do his bath.  You know, something totally normal, if she didn't have to work around the breathing tube, the umbilical lines and the urinary catheter.

His mom begins to cry.  As tears roll down her cheeks she wrings her hands and manages to choke out, "I'm afraid I'm going to hurt him!"

I'm going about my day, trying to mind my own business while charting on my patient, but standing 3 feet from her, I can't help but hear everything she says.  My dead baby mother's heart responds so keenly, as I know what she is REALLY saying.

I'm afraid I already hurt him.  I'm afraid I've killed him, or damaged him beyond repair.  He's broken and it's all my fault.

As a nurse I could tell her "it's not your fault" and really mean it.  She did nothing wrong.  It was an accident. Nobody meant for this to happen.  Not the midwife, not the pediatrician, not the doctors, not the nurses, not her husband, not the baby and certainly not his mother.  But I know, she will blame herself...we always do.

A few days later he is breathing on his own.  Learning to eat from a bottle.  He will have challenges, but he will go home.  His mom is holding him and she looks a little better.  At least she smiles back at me.

He is one of the lucky ones.

Another day, I'm over at the fridge.  Searching around for the containers holding my patient's breast milk so that I can draw it up into tiny syringes to push down the tube in his nose into his stomach where it will hopefully stay to be digested and not end up back on my shoes.

I look over into the room next door.  The lights are dim, even though it's the middle of the day.  The staff doctor is speaking quietly to a couple sitting in matching rocking chairs by their son's bed side.  They are absolutely still.  I can tell just by their posture, and the blank looks on their faces that it's not good.  His nurse leans over to me and whispers, "she's talking to them about withdrawing fluids..."  They have already been told their son is beyond hope.  Unlike other organs which can recover from a lack of oxygen, the brain cannot.  His death certificate will read asphyxia.  Withdrawing fluids will help to not prolong things.

Withdrawal of fluids is completely appropriate in this case.  It is only offered in situations for which nothing can be done, and the family has agreed to a DNR.  But as I stand there watching that couple hear a doctor speak so calmly and plainly about hastening their son's death, I remember what it's like to get that news.  Nothing can be done.  No hope.  Beyond saving.  Might as well end it now.  It hurts.  Hurts like a gut wound.  You feel your stomach dropping out beneath you.  You feel dizzy and sweaty, like if you could only just block your ears, your mind, your heart, maybe all this awfulness will just go away and leave you and your family alone.  But it won't and it doesn't.

I look at the parents.  They are so completely, totally ordinary.  A month ago she was probably at her grocery store, or in the mall, or at church or at work, getting belly pats from well meaning old ladies chirping "oh, looks like it's any day now!"  She likely smiled and then rolled her eyes as they walked away.  He probably assembled the crib and attended birthing classes feeling like a fish out of water.  Worried about being a good enough dad, and maybe even rubbed her feet after a long day.

A month from now she will be back at that grocery store, slowly walking down the aisles.  Avoiding the one with diapers and wipes and formula, because even though she was going to cloth diaper and breast feed, it's all just too big of a reminder.  He will be at work, shooting the shit with the guys...but breaking a bit inside when colleagues mention their kids.  He'll quickly look away and busy himself with something else.  This year won't be what they thought it would.  No camping trips with an infant.  No holiday parties with the 'grandparents'.  Just them, alone again in an empty house.  I can see it all because I've lived it, and now they will too.  I wouldn't wish it on my worst enemy.


How is it that so many babies traversing the,what? Maybe 10 cm total?, through the cervix and down the birth canal go from 'fine' in one spot, to 'dead, or dying' and the end?  It seems completely ludicrous that the only 10 cm you absolutely HAVE to cross in your life is the most dangerous of all.  Good job mother nature.  You can be such a cruel bitch.


Oh look at that, it's 7 o'clock.  Quitting time.  Yep, just another day at the office.  

Should have been a librarian.


  1. Oh Emily. You're right, it is such a treacherous, short journey. Those 10cms. I'm sorry that parents receive this new in your 'office' but I'm glad and sad, both at once, that they have one close by whose heart knows how they feel.

  2. I am inspired by your strength. I often feel like I don't want to go back to work, but my work certainly doesn't have the challenges you face at "the office." I will be thinking of you when I go back in two weeks. Thank you.

  3. Reading that makes me remember being at the hospital with Evelynn. It was just one year, minus 4 days ago. She was a perfect, beautiful, baby girl-except she was severely brain damamaged-asphyxia just like this baby. Hearing the doctors say that it is irreversible, no hope. Ugh!

  4. I'm so glad someone like you is in there, that these parents have access to you and your care, even if they don't know how much you care.

    Librarians aren't on the front lines the way you are (for which I'm very grateful), but we aren't completely safe, either - I'm not sure any job is, once your eyes have been opened so forcibly.

  5. Tears in my eyes as of course this hits home. Sometimes I still foolishly think others don't know or understand this pain of mine, the experience of losing a baby, and knowing that the biggest decision of your life will be who will hold your baby (if anyone can) as he/she dies. Much love to you and this family!!!! XOXO

  6. That was us. We were those parents, too. ARE those parents, still. Even after two years, I can hardly read this post. Thank you for being there for parents like us.

  7. That was us too. Still don't understand how it happened to us...stage three HIE. How? Why? Fuck...I relive those moments at least once a week. I did have a nurse at the ICU I was in who was also a BLM, she is why I have pictures of Xavier. You have an important role In the lives of these parents...thank you.

  8. I've read this several times and haven't had the ability to put into words the way I feel.

    Because this was us too- the bowed heads and blank stares. And making plans for a life without Jack and still waiting for a miracle even though it was too late. Waiting for the donation process to work it's way through... Ugh. So heartbreaking.

    I'm so glad family one has a chance, and so sad family two didn't. :(

  9. As a nurse you could tell her "it's not your fault" and really mean it. She did nothing wrong. It was an accident. Nobody meant for this to happen. Not the midwife, not the pediatrician, not the doctors, not the nurses, not her husband, not the baby and certainly not his mother. But I know, she will blame herself...we always do. but we can always try to convince her