written by Lisa Hartley, Emma & Dani’s mom

I would like to introduce my two sweet Heart Heroes – Emma, 6, and Dani Grace, 1. My first daughter’s diagnosis was a complete and utter shock.  The nursery was ready, the walls were painted pink.  My husband and I were barely adults, young 18 & 19 year olds.   When Emma was delivered, we were at our local hospital that didn’t even have a NICU.  The doctors came in and said the baby’s prognosis was not good and that it was unlikely she would survive.  It just so happened that an on-call cardiologist was making rounds at the time and stopped by L&D to see what all the commotion was about.  He came running into our room with a diagnosis, and it sounded like we had a fighting chance!!  Emma was diagnosed with Tetralogy of Fallot with Pulmonary Atresia.

We arrived in New Orleans and Emma was rushed back to the NICU to start a life-saving medicine that would allow her PDA (patent ductus arteriosus) to remain open until she underwent her first surgery 12 days later.  It was a valve transplant that would allow her heart to be as close to normal as it will ever be.  I was a 19-year-old with few cares in the world and so caught up with whether I was having a boy or girl and the fancy clothes I would put her in, and instead of being with my new baby, I was passing her off to a surgeon for open-heart surgery that would hopefully save her life.  Loneliness is the feeling I remember the most, even though I was surrounded by family. It felt like their lives went on while mine stood still.

Three heart surgeries later (one open-heart), we now have a happy six-year-old with minor delays.  Emma was doing so well and I think it made us better prepared us when we got our next child’s diagnosis.  Four and a half years after Emma’s birth we learned that we would have another Heart Hero given to us.  It was confirmed that we were pregnant in May 2012.  We were ecstatic and also a little anxious. We learned a couple weeks later that we were pregnant with identical twins!  They were checked thoroughly by a cardiologist and looked great!

On November 16, 2013, the twins arrived- ten weeks before their due date!  Due to their prematurity, they were both born with PDA.  Beni Faith’s closed on its own without any surgical intervention but Dani’s caused her heart to enlarge and she began to struggle with feeding.  She had her surgery performed on February 22, 2013, just a few days after Valentine’s Day.  She was three months old and just barely over eight pounds. Going into her surgery, I had more wisdom and peace about the procedure after what we had been through with Emma in 2008-09.

Dani’s surgery went better than expected and she was released three days after surgery.  She has not missed a beat since and has passed every cardiac appointment with flying colors! She has surpassed all the milestones they thought may be delayed and is a happy, healthy two-year-old.

Emma is still being seen four times a year by a cardiologist and will face her next open-heart surgery sometime this upcoming year, as her valve does not grow with her.   She is truly my hero and when she wears her cape, the meaning behind it is more powerful than we will ever know. Earlier this year Emma was granted her wish to go to Disney and she insisted that she bring her cape!

Thank you for allowing me to share a little bit of our courageous CHD journey. These two girls are truly superheroes in my eyes!

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