Almost 2-month-old Mazie was diagnosed with Pulmonary artesia with intact ventricular septum (hypoplastic right heart syndrome). She has been in the hospital since birth, having multiple heart procedures and tests. She has a twin brother and loving parents.
While waiting at the hospital during a stent procedure for Mazie, her father wrote out her story for us to share.
“We found out that one of our twins (our girl) had a heart condition at our 20-week ultrasound. Initially we were diagnosed with a condition called Tetralogy of Fallot. After a few weeks of researching and talking to doctors we were pretty happy to discover that this was something that could be cured right after birth with surgery.
Unfortunately, a few weeks later we met with our cardiologist the for the first time and discovered that our girl had something called Hypoplastic Right Heart Syndrome (later to be diagnosed more specifically with Pulmonary Atresia with Intact Ventricular Septum). This meant that the right side of her heart was underdeveloped, and she would likely need a series of procedures that would reroute her heart to function with only one side (the left). We were obviously pretty nervous about the situation, and it didn’t help that every time we went to see the cardiologist her condition seemed to get a bit worse (initially there was some hope that her heart would begin to develop normally, and that she would not have a need for an immediate procedure, and late in the pregnancy she stopped growing much at all).
Fast forward a few months and our twins were born! Our beautiful baby girl weighed 3 Lbs. 10 oz at birth on July 15th. We initially had to wait a few weeks before there was any word on a plan because she was so small. Eventually her team decided that a PDA stent was the best initial decision (this allows the PDA to stay open and provide blood to the lungs, the PDA normally closes shortly after birth). The stent was a success despite some initial concern!
However, our girl did need a second one a week later due to too much blood flow, and this one seemed to do the trick for a while.
After her second stent, Mazie had some issues eating, and they needed to put her on a seven-day bowel rest due to fear that she was showing signs of necrotizing endocolitis (which they caught early). This felt like a major setback at the time because we had planned on taking her home shortly.
After her bowel rest, she was able to eat again, and her blood flow was looking good. My timeline is a little fuzzy, but I think this was probably about a month after birth (about a month ago now). Since then, the biggest concern has been blood sugar. Our girl has had low blood sugar and they haven’t quite been able to figure out why. They’ve had her on different meds to figure it out, and still aren’t quite sure what’s going on. We are hopeful that she’ll be able to head home soon, though, as I believe her blood sugar is beginning to stabilize a bit, but this last speed bump has been taking quite a long time.
As I type this now, Mazie is actually in the cath lab for her third stent procedure (this is standard, she grew out of her last one).”
Hearts of Hope Network is here to help Mazie’s family. Because of generous donations and support, we have sent Tony’s Hugs packages to each member of this family and are here to help throughout their journey.
Mazie’s family is also fundraising on their own. While we are here to help, the cost of caring for a critically ill child can be very extreme. Many times, their parents have to take off work or quit working to care for their child. We thank you for supporting Hearts of Hope Network through donations, and if you would like to help support this family even further, please consider following their support links below.
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