The Diagnosis

We had some amazing nurses at Seton & Dell.  They did so much for us.  They made us feel at home, safe, heard, and helped us celebrate and enjoy Brooklyn.  

It was the day before Thanksgiving (11/21/12).  Corrie and I came back to Brooklyn’s room to find that one of the nurses had prepped for a photo shoot to celebrate Brooklyn’s 1 week birthday.  This was an amazing surprise, so we jumped in and took some really fun pictures.

Right after we completed the photo shoot, Dr. Hodges (head neonatologist for the Dell NICU) walked in her room.  He asked us to sit down, and I immediately switched from the joy of the photo shoot to fear.  I knew Dr. Hodges had something heavy to talk about… He informed us that the test result we were waiting for had come back from the Mayo Clinic.  100 out of 100 of Brooklyn’s cells tested positive for Trisomy 18 (a.ka. Edward’s Syndrome).  We were devastated.  The doctors had told us that this genetic/chromosomal disorder was a possibility, so we were hoping and praying that Brooklyn’s troubles wouldn’t be rooted in this.  Pretty much anything else would have been ok with us because we knew Trisomy 18 is a lethal disorder.

Dr. Hodges began discussing the diagnosis with us.  We didn’t know what to say or think.  We were definitely scared, angry, sad, and frustrated.  He told us that there is no way to tell how long Brooklyn had to live.  She could live hours, days, weeks, months, but the odds were high that she wouldn’t make it beyond her 2 week birthday.  Dr. Hodges prayed with us before leaving us to be alone with Brooklyn.

I won’t ever be able to use words to communicate the level and types of emotions that were running rampant in Corrie and me.  We went to places we never knew existed and definitely didn’t want to be there.  This began an extremely messy time for us.  We sat in that room weeping over the reality that this dream would soon be gone.  This journey had already been really difficult – 8 months of trying to get pregnant, Corrie had morning/all-day sickness for almost 24 weeks, a known heart defect during the pregnancy, a dramatic emergency c-section, and now this! I was angry and wanted the madness to stop.  We wanted nothing more than to get out of this long period of pain/frustration and move into a long life enjoying Brooklyn.  I wanted to fix things, but there was nothing I could do.  Trisomy 18 is a random disorder that begins soon after conception when the cells start forming the baby.  Brooklyn has 3 #18 chromosomes when she should only have 2.  We did nothing to cause this and there was nothing we could do to make it go away.

-AH

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