Hope For Harley

Harley Quinn McBride, born on June 10, 2016, is one amazing baby girl. She is the first known child to survive the extent of her anatomical abnormalities. Born with her trachea and esophagus all one pipe, called a Type IV Laryngeal Cleft, we were told it had a 94% mortality rate and there was little to nothing they could do for us in Chicago, and possibly anywhere. 

Somehow, Harley miraculously survived without life support and any major issues for two whole weeks. This allowed the doctors time to figure out what was wrong, and gave them a chance to find a doctor who was willing to take on such a rare and risky case.  To our amazement, a surgeon with success at Type IV repairs agreed to try and do what he could for Harley. At two weeks of life, Harley was flown from Chicago to Cincinatti, where she was intubated and fed through a central line until she was big enough for her repair. 

She continued to amaze everyone when four months later she successfully made it through a 13 hour open chest surgery, where they stopped her breathing and circulated her blood through a machine that oxygenated it for her, called ECMO.  Her surgeon used tissue from her shin to essentially build her a wall between her windpipe and food pipe. She later took on two more surgeries to finish her repair and to fix and work around some other abnormalities she has, like an extremely small stomach that is up in her chest, rendering it useless at the moment. 

Although her battle is far from over, Harley is thriving and doing better than we ever dreamed possible. She is so full of life and joy. She was moved out of the NICU in December, a huge accomplishment we waited six months to see happen.

In January, Harley was weaned completely off the ventilator, a machine that helped her breathe. The doctors were blown away that she is able to breathe on her own. Many doctors thought she would always need a ventilator. They've just never met someone quite like Harley.

In fact, it was revealed that Harley's cleft actually extended even further than originally thought. It extended all the way down her left bronchi to her lung. She is the longest known survivor given the severity of her issues. Until Harley, there was a 100% mortality rate. They're call her The Miracle Baby!

In February, Harley was transferred from Cincinnati back to the hospital she was born at.  

Now we are currently making arrangements with local healthcare providers to get set up with equipment, supplies, and home nursing. Although Harley is repaired, she still requires a trach to breathe, and a feeding tube to eat. Despite everything she's been through, she is the happiest person I've ever met. She refuses to let life get her down. She greets everyone with a smile. She is nonverbal, but she is learning how to mouth words, like "Hi!". She is full of light, and shines her warmth over anyone who spends time with her. 

Thank you all so much for your ongoing support of Harley and crew! Your generosity, prayers, and positive thoughts continue to help us though this extremely difficult time. It means the world to our family and we thank you all for the outpouring of love!

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