Thursday, September 8, 2016

A Journey of Self-Assessment - From The Mind of a 9 Year Old Medically Complex Patient - Stanford Medicine X

Alexandra Mae Edges was born at 4:28pm on July 5, 2007. She was born with Heterotaxy Syndrome, Complex Congenital Heart Defects, and a rare liver vasculature anaomly called Abernethy Malformation. She has undergone 5 open heart surgeries, an abdominal surgery, countless cardiac catheterizations and other procedures. She has been evaluated for a combined heart/liver transplant by three of the most prestigious centers in the U.S - and has been denied all 3 times.

She is my daughter. Her journey is my journey. I tell her story until she is able to tell it herself.

We do not often talk about mental health in children, perhaps maybe about ADHD, and other issues, but never about the impact that complex medical conditions and chronic illnesses have on children. This post - this story and journey is about physical and mental manifestations of Alexandra's condition, and how her therapist uses the idea of self-assessments to help Alexandra to come to terms with her negative feelings about herself. Alexandra began this therapy back in March of 2016, and has come a long way in her therapy.

Alexandra taken by Gilles Frydman April 2016
Gilles description of her "Sadness and Wisdom"

Alexandra's first brain self-assessment.
September 1, 2016

Oftentimes Alexandra portrays her brain as happy. It is not until she beings to describe her internal organs, be it thoracic or abdominal organs, and even her limbs that we can see her true feelings about herself. At this point in her life her emotions don't seem to be connected to her brain, they are connected to how her body 'physically' feels. 

Alexandra's brain self-assessment September 8, 2016.
Described by her as a "happy" brain. Therapist wondering why the line of declination from red to black shaded brain matter.

Initial drawing of her heart, March 2016

Once we begin to look at how she perceives her organs, we can see how her physical body affects her mental state of mind. Here you can clearly see the lines drawn on her heart which she described to her therapist as "all the flipping heart surgeries I've had - its broken". She refused to tell the therapist what the olive green mass was. 

Heart by Alexandra. July 2016. 

As her Mother, this particular picture is very hard to see. She has labeled emotions inside her heart, and also you can see the line of broken (spelled borken to her). Thankfully there still looks like a lot of love. 

Cocoon heart. August 2016. 

Notice how the line of broken is gone in this picture. She says her heart is in a cocoon and it will turn into a butterfly soon. The heart has a smiley face. 

Happy Heart. September 1, 2016

Alexandra gives us a peek into her inner psyche best when she is faced with a whole body self-assessment. She gives her organs emotions, and describes what they do or do not do. 

Initial self-assessment. June 2016. Alexandra describes this as "poop". 

Self-Assessment June 23, 2016 Alexandra called this "AHHHH!" 

In January of 2016, it was discovered through cardiac catheterization that Alexandra's left lung was no longer helping to oxygenate blood as it was riddled with pulmonary arteriovenous malformations. Here you can see how she labeled her left lung all colored in. She also told her therapist that in this picture she feels like "poop". We get that a lot with this young lady!  

Self- Assessment July 2016. "Sad Liver"

One of the most interesting things I find in analyzing her self-assessments is the fact that she gets her anatomy correct. Her liver is in fact more towards the left, which she correctly displays here as if she was looking down at herself. Interesting enough as well she also has told us a story about leaving her body during heart surgery and seeing her body lay below her with her chest open and blood everywhere. She can even describe the surgeon and the noises as during this particular surgery she had a bad bleed that could not be found and the surgeon was scrambling to find the bleed. We almost lost her that day. Eventually she was given Factor 7 and came out of the bleed. Only to find out that 3 months later she had over 100mL's of free flowing blood in her abdomen during a laparoscopic  LADDS procedure. 

 Self- Assessment Late July 2016. "AHH for Chicago"

She has written a curved line here and explained that this was her worsening scoliosis. She will one day have to have spinal fusion to correct it. In early August of this year we traveled to Chicago to see a world renowned doctor who specializes in Abernethy Malformation. She underwent a venogram to see if there was any semblance of a portal vein. She indeed has a porto-systemic shunt that has pulled blood flow away from her liver and is never filtered by the liver. The doctor can do surgery to correct this shunt - but it is a very long, difficult recovery. Alexandra was very concerned about this. 

Self-Assessment August 18, 2016. Emotional session. 

According to Alexandra's therapist the above self-assessment and session was the most emotional to date. Alexandra cried for the first time. She explained that she was terrified of having the surgery to correct her Abernethy Malformation. 

Self-Assessment late August 2016. "Gone on Vacation"

Alexandra has an over 50 degree curve to her scoliosis. Braces have not worked for her because of the ever differentiating size of her abdomen due to high central venous pressures and an enlarged liver. Because of this, her left leg has begun to turn in as her hip juts out from the curve in her back. It causes her pain. She cannot walk long distances. She told her therapist that it goes numb and "Goes on vacation."

Self-Assessment September 1, 2016

Self- Assessment September 8, 2016 "Surprised"

The high cost of health care is no unknown matter. After much deliberation, my Husband and I decided to postpone Alexandra's shunt banding surgery til this Spring when we are more financially stable. Alexandra was very surprised, and is happy. Again here you can see that her left leg is again "gone". It seems all her organs are "surprised".

I truly believe that the idea of self-assessment in chronic illness and medically complex patients is something that can hold so many valuable insights into the minds of some of the youngest patients out there. Mental health in chronic illness should be a mandatory part of the treatment plan. 

This is only the beginning of Alexandra's journey of self-assessment. While I have done my best here to try to give her voice, I truly believe that if we all take the time to really look at her drawings we can see a little girl with a big health problem and a very strong spirit. 

The Day We Took Her Home July 2007

The 4 of Us - The Edges Family 

1 comment:

  1. Hello! It was nice to get to know your beautiful little Alexandra in this blog post. My daughter is 7 she was just diagnosed with Aberne thy malformation type 1. It's been a long 4 year medical journey to get here. There are still somethings that don't quite make sense. Ibe been looking for some othere people with this diagnoses. I would love to be able to contact you directly. My email is I hope to hear from you!