When Abby was in the hospital recovering from her first open heart surgery, I had an experience that I can’t get out of my mind.  I think about it often and still get overwhelmed with the same emotions I experienced that day in June of 2000.  I have shared aspects of this experience in a creative writing story on my blog a year or so ago, but I have never put the experience into words.  I have seen a lot on this journey with Abby’s Tetralogy of Fallot.  We have met many mothers who have lost their children to congenital heart defects.  Each one brings a wave of pain and heartbreak.  I have cried over many of your angels when I learned of their passing–but this experience still haunts me.  It is one of the ways heart defects continue to break this mother’s heart, years after the actual experience.

I don’t know the baby boy’s name–I think it might have been Braden or Bradley with a last name of Jameson or Harrison—I only noticed it briefly on the PICU dry erase board that helps everyone keep track of which patient is in which bed.  In June of 2000 Primary Children’s hospital didn’t have a CICU so all heart patients were cared for after surgery in the PICU.  They had no glass partitions or separate rooms then, if you wanted a separate room, you had to pull the sliding curtains around your bed, giving you privacy from the eyes of others, but not from the sounds.  Others could still hear everything behind the curtain and you could still hear everything going on behind other curtains.  Two beds over was the baby boy whose name I probably will never know.  In between Abby and the baby was another baby, who was well on his way towards recovery, and also had very little visitors.  His curtains always remained open.

Abby had surgery on Friday and had her chest closed on Sunday.  She was still in serious condition, but was stable and making slow steps towards a recovery we were warned not to expect.  She still had breathing tubes in and was sedated at all times.  I had little to do but sit and sing softly to her or stroke her silky black hair.  On Monday I noticed the new baby two beds down.  He was brand new–hours old.  I noticed his parents later that day as well in the hallway.  They were tall and she was obviously recovering from childbirth, tenderness in walking and having a hard time moving.  They were smiling and looked hopeful.  Tuesday, Abby had opened her eyes and was being weaned off oxygen in the hopes of extubation so I was hesitant to leave her even for a second.  I wanted to be there when she began to wake up more.  In the afternoon the baby boy two beds over crashed.  His heart rate suddenly fell flat and a “code blue” was being called out.  Nurses were suddenly all around him, administering meds and doing all they could to get a heartbeat back.  Their hands were as big as his entire abdomen.  It was a tense couple of minutes until his heart began to beat again, ever so faintly–just barely.  Abby’s surgeon was also his, and he was present by the time the heartbeat had returned, but called for an emergency shut down of the PICU so he could perform an emergency procedure in an attempt to save the baby’s life.

I hadn’t noticed before, but his mom and dad were standing there watching all this.  That is when the surgeon looked to them and told them to quickly kiss their baby boy and then wait in the waiting room.  I will never forget that scene as long as I live.  The mom leaned over her baby boy and whispered in his ear and kissed him and began to sob.  Dad reached over and rubbed his little boy’s head, kissed him, and then began to gently pull his wife from the baby’s bedside.  She sobbed, a gut wrenching, agonizing sob that was undeniably the sound of pure agony.  They quickly left the PICU out the doors that were directly in front of Abby’s bed.  The curtains were whisked closed around the baby and the PICU was on lock-down–meaning no one in and no one out until the emergency procedure was performed.

I was left sitting there, trying not to look at the curtain and choking back tears and an impulse to break down crying.  After the baby’s parents left nothing remained in the room but an agony that suffocated everything.  It choked out my breath and even the sounds of the PICU machines which are never quiet.  I was aware of nothing but the struggle for life two beds down from my own heart warrior.  Minutes passed, and nearly an hour later the curtains were pulled back.  The baby boy was ashen and his little chest barely moved at all.  His heartbeat on the monitor was still barely beating.  The look on our surgeon’s face said it all.  Whatever emergency procedure he had just performed had not worked.

Moments later the baby’s parents returned.  They were crying and obviously every bit as heart broken as their baby that lay before them.  Family members had gathered.  Grandparents, aunts, uncles, and others were there.  They had all come to meet this little miracle for the first time–and the last time.  After they had gathered around his bed they pulled the curtains closed, in an effort to say goodbye with some little bit of privacy.

I left.  I couldn’t stand being there any longer.  I can’t begin to explain the pain at watching them go through such an agonizing experience.  And there before me, was my little warrior, fighting for her life, but winning her battle.  I know his heart defect was much more serious than Abby’s, requiring immediate surgery after birth, but it didn’t ease what can only be described as survivor’s guilt.  My mom told me that she had talked to one of his grandparents in the hall.  He had asked about Abby and she had told him about her surgery.  He then asked how old she was.  My mom replied, “Five months.”  Then the baby boy’s grandpa said, “I wish we could have had five months to get to know him.”  I thought about the comment as I left the PICU, and found an abandoned and quiet hospital bathroom to break down in.  I have spent a bit of time crying in the hospital bathrooms at Primary Childrens and that night was no different.  I cried.  Tears of sorrow for their loss.  Tears of gratitude for Abby’s slow, but gradual recovery.  Tears of guilt that Abby was alive in her bed while he was laying there dying in his.  Tears–for all those whose lives are halted and whose hearts are crushed and whose worlds are turned upside down by the world of Congenital Heart Defects.

I returned some time later to spell my mom who had taken a turn at Abby’s side so I could escape.  Immediately upon entering the PICU I noticed that his line on the white board was now empty.  His name had been erased.  I glanced over at the bed space and a janitor was there instead of a bed, mopping the floor, like he was cleaning up a lunch room.  The emptiness of it all is hard to describe.  I was standing in the middle of the insanely loud and crazy PICU with machines beeping, phones ringing, oxygen machines swishing, and yet it seemed so empty.  He was gone.  He was the first baby I had ever seen whose life had been stolen by CHD.  I will never forget him.

I wish more than ever I knew his name.  I have scoured the internet looking for obituaries of baby’s who passed away in June 2000.  Of course I haven’t ever found him.  Our children’s hospital serves five states and countless cities.  I don’t know why I want to know his name, other than to remember.  To remember him and his parents and his lesson to me that every day I have with Abby is important.  That every heart baby who survives is a miracle.  That every heart baby who loses their battle to a heart defect is loved by someone and missed by someone and has taken a piece of their parents’ heart with them that will never be whole again.

I don’t share this story with you to bring you down, although I know it does.  I share it in the hopes that you understand more of the stakes for our heart children.  I share it so that you know why I keep this blog and why I find the message of CHD awareness important.  I share it so that you might love your kids a bit more, squeeze them a bit tighter, and take complete joy in everything they do, because somewhere out there, this mother, and too many others like her, will never be able to do those things because of congenital heart defects.  I share it because it truly haunts me, in quiet times his memory comes drifting to my mind, and I find myself choking off tears all over again.  Mostly, I share it to remember this baby boy whose name I don’t know who taught me to value the gift of life that is held in Abby’s perfect broken heart.  Fly high baby boy…you are never forgotten.