Hope for Harper’s Heart

Harper was born with 7 congenital heart defects. At just 7 weeks old she underwent her first surgery to fix 4 of the defects. At first the surgery seemed like a success, but just a couple of weeks later we noticed she was breathing weird. We discovered that one of the corrections they did was to move her aorta and the had compressed the opening to her left lung closed. At first the doctors hoped she would grow and have room for everything but 2.5 years later she had not, so she went underwent another surgery to attempt to lift the aorta off the airway. Jump forward another 2 years and we started noticing more problems again. Harper was really starting to struggle to breath especially when she was playing, her extremities were turning purple and the vein in her neck would pulse so hard you could visually count her pulse. Doctors couldn’t explain it, so to be on the safe side they ordered a CT and bronchoscopy. After 2 weeks of emails and calls saying “we think she needs surgery but we don’t have answers yet” we got news we were not prepared for. The bronchoscopy showed that her airway still was only 30-40% of what it should be, and the CT showed that once again she had not grown how they had hoped. Now everything was more compressed than before (now including the part of the aorta that takes blood to the lower half of her body), and the whole lower lobe of her left lung was partially collapsed. “She’s pretty much operating on one lung and if we don’t do something soon it’s just going to get worse,” was what her surgeon told us. As parents we were like “okay this is scary but we’ve been here before and we knew she would have to have further surgeries is the future,” it just wasn’t suppose to be for a few years. Then they dropped another bomb, the reason it took them weeks to give us a plan was because her surgeon was consulting with doctors from all over the country to create a surgery for her that has never been done before .  Dr. Jaquiss is working with Dr. Fraser from Dell Childrens to create a surgery where they will essentially move her aorta back to where it was originally. If for some reason they can’t do that, their backup plan is a surgery that has been done before, but only 6 times in the US. Surgery date is August 27th, and we will have a long recovery. Since this has never been done before they can’t give us any timeframe of how long she’ll be hospitalized, she will be activity restricted for at least 6 weeks (fun with a 5 year old). On top of all of this Harper has a genetic condition that makes all of her blood vessels weak and prone to aneurysms, so that will just add to the complexity of the surgery. Please keep our girl in your prays, she is a feisty, sweet little girl who loves to sing and dance.