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Sunday, July 3, 2011

Never Enough

A few years ago, I saw a vey funny episode of Dexter's Laboratory.  It was entitled Star Check Unconventional and the episode took place in world where a Star Trek-style science fiction convention meets a Barbie-style convention. This episode introduces the important concept of NRFB.  If you are one of my science fiction, Doctor Who-loving, uber tech geek friends, you will know exactly what that means.  I will explain the phenomena and abbreviation to the rest of you. It refers to the pinnacle of any collector: Never Removed From Box.  Oh, the exquisite joy of owning something no one has touched since manufacture! 

There is only one moment that is better: When you finally open the box.

I was the perfect audience for this episode, as I am a huge Trek fan and also am a big fan of Barbie.  When people gave me Barbie dolls as gifts as an adult, I kept these collectibles in their boxes for years.  I had a pretty big stash in the closet that I would lovingly caress each plastic and chipboard exterior.  In addition to my Barbie collection, my husband Fred had a whole shelf of Stephen King books that no one was allowed to read for fear of cracking their spines.

When my eldest son Freddie was four, he mostly stayed away from his father's "scary" books; but one day he found my Barbie stash.  At first he was merely perplexed as to why I would keep perfectly good toys in boxes for years in a closet.  Next, he reasoned that I must have been waiting for him to get old enough so we could play with them together.  I began explaining that they were special, collector’s items.  I even had Olympic gymnast Barbie 1996 and very special Ballerina Barbie with the palest skin and gown.  These dolls were too important to play with.

Freddie was outraged said,  "You play with toys! Let's open all of them now!" For a moment of indecision I held back.  Then we ripped into the boxes and began the Barbie Liberation Movement. Oh, what a glorious day!  I waited so long to smell the plastic of their bodies and run small brushes through their hair.  They were so perfect!   We played with those Barbie’s for hours, then weeks. I returned to one of the greatest joys of my childhood and I took my little boy with me on the journey. 

The thing that is better than NRFB, is holding your greatest happiness in your arms to feel it and caress it.  And this memory is linked to another in my mind: the birth of our son Freddie.

I had carried him inside me for 36 weeks.  I held him so long without being able to touch him.  I loved him and fantasized about his beauty for months.  And finally at 36 weeks, I went into labor.  After five hours of natural childbirth I delivered him.  He was so beautiful.  His new skin amazed me.  He was fresh from the package.  As I rejoiced at his little body in my arms, I traced my fingertip along the peach fuzz of hair across his brow.  Then his temperature began to plummet and they took him away.  About one hour and 45 minutes after I had Freddie, I was sitting at his side in the NICU. 

He was in big plastic box attached to wires.

And I could only touch his little hand.  I could feel a little bit of his perfect skin.  And I would watch as they would stab his little feet again and again to take a large enough daily blood sample.  I felt a kind of impotent rage as his little mouth would curl in pain and would see a silent scream in the moment before he took a breath and his cries would fill the room.  And after seven days in the NICU, we could take him home.  He was still underweight and his bilirubin was high, but we could take him home. 

I would rejoice and hold him in my arms and trace the peach fuzz upon his brow.

And all of this I thought of when I painted Mary Ellen's Jacket: Never Enough.
Never Enough: Mary Ellen's Jacket
In 2001, Mary Ellen Mannix was a happily married mother of three when she found out that she was expecting her fourth child James.  At 20 weeks James was diagnosed with a possible coarctation of the aorta.  The doctors were not overly concerned because it seemed as though James did not have a severe case of this hourglass shaped malformation of the traditionally long-tube shaped structure.

Mary Ellen did as much research as she was able to do.  This was 2001, so like many of their friends they did not own a home computer.  She utilized a network of friends to find out their recommendations for the best hospital for delivery.  Mary Ellen and her husband were assured time and time again, "We are not talking open heart surgery here. Your child does not have a life threatening heart defect IF he even has one at all. This is very minor."

 James was born on October 2nd, 2001.  He was a large baby.  At birth, he had a loud raspy cry. The delivery team took James away for an ECHO and would not let Mary Ellen’s husband Mike attend the procedure.

After three hours with no communication as to the results of the examination or being told the whereabouts of their son, Mary Ellen and her husband began looking for him.  Their current hospital had already arranged transport for James to be admitted to another hospital where a world-renown surgeon that specialized in this disorder could treat him.  Mary Ellen was upset.  The parents had not been informed about nor consented to transfer.

Mary Ellen expressed her desire to keep her son near her.  They spoke to a Pediatric Cardiologist in the hallway who assured them, “Oh he is fine. James looks great. We just figure they can monitor him down there the next couple of days."  Mary Ellen again expressed her concerns and desire that baby James stay near her.  The cardiologist responded, “If he were my baby, I would want him there. Just in case something happens."

Mary Ellen felt disempowered, and pressed into a treatment path not of her choosing.

James was eating and doing great, and he continued to do so for the next 36 hours.  He was a beautiful baby with such lovely skin, so loved by his parents.  There wasn’t an emergency situation.  When the hospital asked for consent to “correct the coarct,” Mary Ellen and Mike were told a catheterization procedure - like a balloon angioplasty would be preformed upon James.  Or perhaps, medication could be prescribed instead of surgery. They were assured that procedure was a minor one: "We are not talking open heart surgery here."

The next day they took him.

At this point Mary Ellen and her husband learned nothing more about what happened to their son until after they hired a lawyer

The staff at the new facility performed open-heart surgery with deep hypothermic circulatory arrest.  They used a broken ventilator during surgery.  After surgery the family was not allowed to be with James, as it would “excite him too much.  The family was briefly allowed to see him at 4:00pm.  A nurse said, "When you come back you will be able to feed him."  As Marry Ellen was still adjusting to the knowledge of all that they had done said, "That is okay. I can wait. Don't rush him. So long as he is ok, I can wait."

When Mary Ellen and Mike left the room, the unit staff electively extubated James.  His CO2 went up and his oxygen saturation went down.  They took blood gas after blood gas every 15 minutes for the next 3 ½ hours.  Then they dosed this little baby with a huge dose of morphine. 

Things went from bad to worse.  Staff members who had left for dinner were paged back.  They did CPR.  They had to open his chest again and gave James several epinephrine shots straight into his heart.  A doctor who a few moments before had been enjoying his dinner, was doing cardiac massage to James walnut sized heart.  

Then they put him on ECMO.  This is used in intensive care medicine and is an extracorporeal technique of providing both cardiac and respiratory support oxygen. This is used with patients whose lungs and heart have been severely damaged and is considered a treatment of last resort. James was back on a ventilator after having been taken off one too quickly.   Then he was placed on it too long. He developed ventilator-associated pneumothorax (preventable).  He was brain damaged.

As Mary Ellen’s lawyer phrased it, "It was a parade of horrible." Things kept getting worse: more medication errors, another surgery without consent, hospital acquired infections and sepsis. The evening of Oct11th, James was starting to look better. He was taken off the ECMO. The staff finally asked for breast-milk for James.  He looked so beautiful.

Mary Ellen fell asleep while expressing, and was woken on the morning of October 12th by two Doctors informing her that James had been take into emergency surgery.

Later that morning, Mary Ellen saw her precious James.   He was black blue and purple all over. He skin was taunt and swollen to the size of a nine month old. His one hand was completely black. He had an open wound from the surgery on his right side.

She knew he was gone.

They put him back on ECMO.  It was a Friday.  The surgeon was not to be found. Mary Ellen and Mike kept asking to talk to him.  Eventually they left the CICU and in the hallway we tracked him down. 
A father's love
Mary Ellen’s husband Mike asked him, "So you will oversee James's care this weekend?"

He said "No."

Mike said, "Then who will be in charge?"

The Doctor responded with, "I don’t know."

Mike said, "Really, we just want to know who will oversee our son's care this weekend."
The Doctor answered with, "What difference does knowing that make now?"

Mary Ellen and Michael turned the machines off the next morning – Saturday October 12th.  James had lived for eleven days.  Marry Ellen and Mike gathered their things in silence.  No social workers, no clergy, no doctor or nurse would help them in their darkest grief.  Just silence.

In the weeks and months that passed, more silence.  No one would tell them what had happened.  No one would tell them anything, until they had a lawyer and went to court.  The Mannix family was offered 750,000 dollars to settle the case. To get that sum, they must agree to silence.  There was a gag rule attached to the settlement.  They must never speak of the case again.

They turned down the settlement.
Never Enough
That would never be enough.  Mary Ellen knew she must tale this tale, for her family and for everyone else who was suffering.  She must tell it for all the other families who had the same story, but to due financial reasons accepted silence in exchange for needed recompense.  She would write a book and spread the tale. And that would not be enough.  She would found a non-profit called James’s Project in order to get books such as hers and the work’s of other advocate patients in the hands of medical students, doctors and other families.  And that still would not be enough. She would walk in the Walking Gallery with a picture of her baby on her back.
A book offering
It would never be enough, never enough.  Because I know where Mary Ellen’s mind goes at night.  I know the memories begin to unspool.  The moments begin in utter normality of breakfast cereals and children’s cartoons and it goes so very wrong.  And each night we relive the silence and the poor decisions, and fill our minds with might have-been.  It will never be enough because James had been NRFB.  He had been perfect and loved and had such beautiful skin. 

And they turned him black, blue and purple.  They destroyed James and broke the hearts of his family members.  And they did it in silence.

No, it will never be enough. 


  1. Thanks for sharing our story, Regina. I especially appreciate the connection to the box. The initial title of the book was "Bringing home a Box" - since all I brought home was a small green silk covered box with his "effects". At 11 days - most of the "effects" are housed in a mother's heart. Sharing our story, I hope more moms, babies and their clinicians create more efective communication strategies during treatment. Everyone is happier (and safer) then.

  2. Dear Lord, Regina - and Mary Ellen. I'm sitting here shattered, ripped to shreds by this story and how powerfully it's told here.

    Mary Ellen, thank you for not accepting that settlement. And I'm finding it hard not to think very obscene thoughts about the people who propose gag orders. What are they thinking - really?

    You who propose gag orders: what ARE you thinking?

    You who were involved in James's case: what did you do afterward, if anything, to reduce the odds of it happening again? Open discussion leads to such considerations; gag orders pretty much PREVENT them.

    Powerful. Thanks.

  3. Dear Mary Ellen,
    Thank you for explaining the box fixation, I felt it was important and was trying to describe why. I am so honored to have you as a member of the Walking Gallery. I am so sorry for the tragic circumstance that brought us together, but I rejoice in knowing you. You and your family are in my prayers and I know we shall live to see change within the system.

  4. Dear Dave,
    It would be amazing if you could include our frustration about gag orders in some of your future speeches/posts. I do not think most folks are aware how many speakers have been silenced.

    Thank you so much.

  5. What a powerful moving touching story. We often turn medical errors over to the legal system when what many people really want and need are explanations and apologies and changes so that it never happens again.

    Recently here in Seattle there were a couple of deaths due to medical errors at our regional Children's hospital. In one case a nurse who had worked there over 27 years gave an overdose of a medication to a baby who later died. She was fired and then a few months later she died from suicide herself.

    Neither patients, family members or providers can afford a healthcare system based on mis-trust, patriarchal mind sets or lawyers calling the shots.

    What happened to you was one of the most painful tragedies anyone can endure and my heart goes out to you. I hope that opening this "box" of pain will help to move us all towards a healing care system that includes parents and family members fully.

    Sherry Reynolds aka @cascadia

  6. Thank you for sharing this heart wrenching story of your beautiful son and the way you were all treated by the 'system' and the people in it. My god we need stories like yours to be told and shared. If ever the health system is to become truly healthy, we must face and expose our underbelly. I am horrified that you were offered money to keep silent - thank goodness you didn't take it. I see so many of these situations settled 'out of court' and while I thought that happened because the parents were exhausted from the incredible pain that comes with such a process, I had not known that such a settlement meant a 'gag' clause. I am very sad that the 'powers that be' can't see the supreme value in exploring, with parents, what went wrong so that they could ensure appropriate and required change in their processes and better communication. Thank you again for your courage.