This Isn't Everything You Are

On Monday we had our full day evaluation at CHOP.  I shared the outcome of that visit in my last post but was not able to give details.  The details don’t seem so important now that we know treatment is not an option.  All the research doesn’t mean at much when you are looking at the scans of your child that is too sick for the treatments to work.  However, I do want to share the details of the visit for those who want to know.

The day started at 7:00 am with registration, about fifteen minutes later we went to ultrasound where we stayed until 10:30.  For over three hours the tech and radiologist took hundreds of pictures of each and every part of Mira’s little body and measured each piece.  Next, we met with a genetic counselor who went over a detailed family history and said she felt sure that when our microarray comes back we will find the medical answer to why Mira has so many developmental concerns.  If that test does not show anything, we can get a full map of her genes.  This will give up more information.  After genetic counseling, we went to fetal MRI for about an hour.  They let me pick a station on Pandora to listen to with noise-canceling headphones (I picked Snow Patrol), so the noise was not too bad.  Laying still was difficult. After the 3 hour ultrasound, I was pretty stiff.  After the MRI it was 12:30, so we had an hour break for lunch.  Next we had a fetal echocardiogram, basically another hour long ultrasound, but just looking at Mira’s heart. When that was complete, the fetal diagnostic team met to discuss Mira’s test results while we waited in the waiting room.  Around 3:30 we were called into the consultation room where the doctor and nurse coordinator sat down and explained all the test results to us.

Mira has quite a long list of medical concerns. The echo showed a Ventricular septal defect (a hole in her heart).  The MRI showed that she has cervical meningocele (a neural tube defect in the neck due to abnormal vertebrae, similar to spina bifida but more severe). She also has a single umbilical artery (there should be two) and an umbilical cord hernia (bowels are in the umbilical cord).  Her feet are clubbed. Throughout the three hour ultrasound, Mira’s stomach and bladder never filled and emptied and she has low amnionic fluid.  This tells us that she does not have a swallowing reflex.  This brings us to the most severe issue, the hydrocephalus (fluid on her brain) is getting continually worse.  At this point that parts of her brain that have developed are pushed up against her skull and impaired.  Hydrocephalus is diagnosed when the ventricles of the brain (the parts that hold fluid) measure greater than 10 mm and it is considered severe at 15 mm.  Mira’s are 22.1mm and 18.7 mm. Her head measures two weeks ahead of where it should.  This is also affecting her brain stem, which is small and underdeveloped. The hydrocephalus is the reason she is not swallowing, it means her brain stem is so compromised that will not be able to regulate anything that our bodies do automatically: regulate temperature, swallow, regulate heartbeat, and, most likely, breathe.  She will not be able to control her muscles.  

If we chose to have surgery for Mira’s bowels, brain, and heart and she somehow survived the surgeries, she would live her life on ventilator, with a feeding tube, and unable to move.  It would be similar to living in a comatose state, but awake.  She would have a life of pain and suffering.  If she even survived surgeries.  This is why we have chosen to only provide comfort care to Mira.  The doctors will ensure she never feels any pain.  We will ensure she knows only love.  We will meet her and hold her and make sure she feels our love with however many minutes we get with her.  We will spend the next three months filling her life with love.  We will talk to her, sing to her, take her to places we love, and read to her.  

We don’t get to talk about Mira much other than to discuss her medical concerns.  But hydrocephalus, heart defects, and umbilical issues do not completely define our daughter.  The medical chart is not everything she is.  She is strong, her heart beat is beautiful and sounds perfect.  She is stubborn.  When the techs try to move her, she swats her hand at them where they push on me.  She is peaceful.  She wiggles herself into a little balls and holds her ankles in her tiny hands.  She is loved.  She will know more love than some people know in a lifetime.  Over the next three months until Mira is born, Joe and I plan to get to know everything we can about her.  She is so much more than the labels the doctors have given her.  She is a child of God.

“And in one little moment, it all implodes

This isn't everything you are

Breathe deeply in the silence, no sudden moves

This isn't everything you are

Just take the hand that's offered, and hold on tight

This isn't everything you are

There's joy not far from here, I, I know there is

This isn't everything you are”

(Snow Patrol)