One of the great horrors of this past year and trying to find any peace at all is the frequency with which we are retraumatized.  Sometimes these traumas are practically unrelated to the death of Max, like when I was called for jury duty.  Sometimes they are related to the selfishness of others.  Often they are related to new potential findings about Maxie and the handling of the last remaining parts of his physical body.

Well, it has happened again.  Just when I think we are almost done with this part of the nightmare.  Ted has been back and forth with the coroner's office and the Mayo Clinic all week trying to arrange the frozen shipment of the last samples of Maxie's blood and urine.  The very LAST samples.  A leading geneticist offered to organize some additional testing on Maxie's blood for anything else that could possibly be ruled out or found with relation to his passing.  This is important to us so that we are sure we are doing everything we can to ensure a healthy life for Baby M.  Every time we have to email back and forth with the coroners office about Maxie's body parts, I can feel the vomit rising in my throat and the knife stabbing deeper into my heart.  This is what is left of my child. The one I grew so happily inside of my own body.  The one I nursed and kissed and loved and sung to.  3 vials of blood and a urine sample (and a liver sitting on a shelf in a refrigerator in downtown Los Angeles). It is a complete horror.  Ted feels exactly the same. 

The package arrived at the Mayo Clinic yesterday morning and they wrote to us with cc's to the coroner and everyone else saying that they received the urine, but not the blood.  The coroners office replied that they had send it all in one package.  The person who packaged the samples explained how they were packed - Three vials of blood in a ziplock with ice, wrapped in butcher paper on top of a smaller box with the urine sample also in a ziplock bag with ice in a bigger box with dry ice.  The Mayo Clinic had maybe thrown it out by accident?  Ted responded in a panic saying "This is all we have left of my son.  Please tell me that you have found the blood".  Several hours later, another response from the Mayo Clinic saying that they had been through all of the trash cans and recycle bins and searched in every possible location and they could not find it anywhere.  

I wrote back begging everyone to check again: 
"Maxie is my baby. He is the most important person in my life. The last year without him has nearly killed me. As I am writing this, I can feel his little brother, who I am nine months pregnant with, hiccuping inside my gigantic belly. I know that whatever we find out about what took our beloved baby's life could help to ensure that this new baby will get to live his. I am not sure why this has happened with the lost blood but the trauma is being felt very deeply. If you can please check again both in LA and at the Mayo Clinic, it would mean so much to us. The blood is his last remaining blood. We feel so protective of his every part. Every lock of hair we saved, every item of clothing with his spit up and baby smell. Please check again."

The response I received from the Mayo Clinic: 
"Dear Ms. Leviss,
I don't know where else to look on our end after already having checked twice in even the most unlikely locations. The package came without any paperwork which is unusual and further suggests to me that we did not receive a complete shipment.
Either way, assuming that your son was born in California, leftover newborn screening dried blood spots should still be available at the newborn screening program in Richmond and could be retrieved if necessary. However, if the CA newborn screen was normal, a diagnosis of (this genetic) deficiency (which I believe was suspected) is unlikely."

So there it is.  No blood.  Nobody to blame (as usual - because we KNOW how everyone protects their own asses).  Nothing to be done.  An offer to delve deeper into the mystery of this nightmare gone in an instant.  Gone like my baby's life.  Again, everyone involved in this situation will move on with their day and Ted and I will drown deeper into this pain, knowing that Maxie's life has been reduced to just this - Lost.


Guest said...

That is devastating. I don't know your family but just reading this made me cry for you. I thought the Mayo Clinic was supposed to be top notch yet they have made this beyond egregious error without so much as an apology to you and your family? Not like it would help, but still. How sickening. I am so sorry this is happening to you.

maxiesmommy said...

I should have mentioned that we received no response from the coroners office. It's hard to say who messed it up. I wish it was clearer who is to blame.

Sarah P. said...

Abby, I am filled with rage right now. I just cannot believe that this utter lack of professionalism, urgency, and sensitivity is allowed to persist. It is just incomprehensible and insane. I don't even know what to say - there's really nothing to say. I am so sorry that this is happening and continues to happen to you and Ted. It is wrong and unfair and sickening. Maxie is in my heart today (and so are you). I wish I could make this nightmare stop for you.

greg said...

I am so sorry this happened Abs. It's unfathomable that something so precious could be handled with such disregard.

Becca said...

This is awful and people should be held accountable. You'd probably have a lawsuit if you wanted to go that route, but I can see how that might just cause you more trauma. It's just a shame that people in such positions don't realize/care how significantly they are impacting Other people's lives.

Melissa Rossi said...

Not even an "I'm sorry, I can appreciate your devastation/frustration/fear/desperation??!!! I understand they deal with this every day but HOLY COW where is the human being on the other side of your email? I am so sorry

robyn said...

i am so sorry about this abby. to not even get as much as a sorry out of these people is unacceptable. your loss i already so great, you don't need BS like this as well. So sorry.

Taryn said...

This is unconscionable. I am sick that anything of this magnitude could be handled so flippantly. This is simply wrong in every way. I find it unbelievable that the coroner's office is claiming that they shipped everything, yet they haven't readily provided any kind of shipping paperwork to verify their claims...talk about incompetent and completely unprofessional! HOW could you EVER ship such precious cargo without making sure that Every. Possible. Precaution. has been taken to make sure it arrives safely...even if it's simply to cover your own rear end?! I just am speechless (not literally, obviously...) and in utter disbelief.

I wish that there was some way to hold someone accountable for what has happened, but I understand that it isn't worth driving yourselves crazy in that pursuit with everything you are dealing with/anticipating right now. Is there anything a common citizen, like myself, can do to help? I'd be willing to bark up some trees for you if you feel like it might help...and I'm sure others would be willing to join me in this effort! This is so infuriating, and I don't think ANYONE should ever have to face such heartless disregard when the loose a loved one...ESPECIALLY from a coroner's office! I am so, so sorry!