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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Tuesday, December 4, 2012

Day 6: Lilly's broken heart

This is my sixth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Lilly was born with two holes in her heart.  They did not close on their own as holes can often do.  This is called ventricular septal defect, or VSD. 

In explaining Lilly's heart condition to Hunter, I simply told him that "Lilly's heart was broken."  It needed to be fixed. 

Easier said than done.  To this day, I still can not believe how difficult it is to get most heart surgeons to accept a patient with Trisomy 18.  We live in North Carolina, in an area surrounded by highly respected hospitals.  But no one would accept Lilly as a patient because it is "unethical" to treat a child that was just going to die.  (Meaning since she was going to die, she shouldn't have to be put through the trauma of surgery.  Never mind that that surgery could very well extend her life ....)

Have you read in news stories about people that are forced - by the courts - to accept treatments for life threatening illnesses like cancer?  I have.  How ironic.

Thank God for Wolfson's Children's Hospital in Jacksonville, Florida.  Thank God for their love and acceptance of Lilly.  Thank God for their surgeons and the team there.

When Lilly was 3 month's old, she was too tiny and weak for the complete VSD repair surgery.  So a pulmonary artery band was placed in her heart. 

The band helped Lilly to gain weight and get stronger.  When she was 16 months old, we returned to Wolfson's for Lilly's "broken heart" to finally be fixed.  Surgery went smoothly, once again, and she healed up quickly, just as good, if not faster, than a "normal" child.

Lilly's heart was fixed and functioning normally. 

"He heals the brokenhearted and binds up their wounds." - Psalm 147:3

1 comment:

  1. love the picture of lilly and hank!
    so sweet and peaceful.
    that was indeed a stressful time.
    remembering how hunter loved riding on the train at the mall...