Gwendolyn Vey's medical expenses
Donation protected
Gwendolyn was diagnosed with pulmonary atresia/ HRHS at 23 weeks. What this means is that the artery that supplies blood to her lungs was closed off causing the right side of her heart to be underdeveloped and basically useless. This form of CHD requires multiple surgeries to reroute the blood flow.
After birth, the heart cath she had showed something called a fistula which is an abnormal connection from one part of the heart to the other, that distributes blood where it's not supposed to go. She was able to recover from the first surgery with a few set backs. One of these set backs was something called mitral valve regurgitation. The mitral valve is in the left side of the heart, the side that Gwen needs to function 100% to be able to survive, and again they said were going to monitor it, but it wasn't too concerning at the time.
Fast forward a few days when they tried to wean her off the medicine that helps her heart pump. This is the same medicine used for heart failure patients. Almost immediately her oxygen and vitals dropped because her heart could not pump enough blood to her lungs and rest of her body without the aid of this medicine. This was the first clue that something was going on. So with a few more tests and echocardiograms they discovered her regurgitation (or back flow) of the mitral valve had gotten worse. The reason for this, or so the doctors believe is because of the coronary fistulas. They think these fistulae have damaged the muscle of the mitral valve, so repairing or replacing the valve would be useless. And they cannot repair these fistulae either. Meaning Gwendolyn cannot proceed with her initial 3 step surgical plan since the other side of her heart is failing. In short, Gwendolyn needs a new heart.
Transplant has personally been my biggest fear from the time she was diagnosed in utero and I was told that Gwen would need a transplant at some point in her life. My heart is aching not only for everything my little girl has gone through, but for the family of the donor's heart we will receive.
Currently, we are in Pittsburgh, which is two hours away from our home. We will not be returning home until after her transplant, which could be a very long time or a very short time. There are no definite answers.
This whole experience is taking a toll on our families, not only emotionally but financially. There's no need to go into specifics, as I'm sure most of you are aware roughly how much a transplant costs on top of just living expenses at home and away from home, it's very trying.
Anything helps, literally anything. Whatever we receive is going to her hospital bills that will be pilling up shortly. What is left after that will be donated to CHD research so we can find a cure or a preventive measure to make sure others don't have to go through this in the future.
After birth, the heart cath she had showed something called a fistula which is an abnormal connection from one part of the heart to the other, that distributes blood where it's not supposed to go. She was able to recover from the first surgery with a few set backs. One of these set backs was something called mitral valve regurgitation. The mitral valve is in the left side of the heart, the side that Gwen needs to function 100% to be able to survive, and again they said were going to monitor it, but it wasn't too concerning at the time.
Fast forward a few days when they tried to wean her off the medicine that helps her heart pump. This is the same medicine used for heart failure patients. Almost immediately her oxygen and vitals dropped because her heart could not pump enough blood to her lungs and rest of her body without the aid of this medicine. This was the first clue that something was going on. So with a few more tests and echocardiograms they discovered her regurgitation (or back flow) of the mitral valve had gotten worse. The reason for this, or so the doctors believe is because of the coronary fistulas. They think these fistulae have damaged the muscle of the mitral valve, so repairing or replacing the valve would be useless. And they cannot repair these fistulae either. Meaning Gwendolyn cannot proceed with her initial 3 step surgical plan since the other side of her heart is failing. In short, Gwendolyn needs a new heart.
Transplant has personally been my biggest fear from the time she was diagnosed in utero and I was told that Gwen would need a transplant at some point in her life. My heart is aching not only for everything my little girl has gone through, but for the family of the donor's heart we will receive.
Currently, we are in Pittsburgh, which is two hours away from our home. We will not be returning home until after her transplant, which could be a very long time or a very short time. There are no definite answers.
This whole experience is taking a toll on our families, not only emotionally but financially. There's no need to go into specifics, as I'm sure most of you are aware roughly how much a transplant costs on top of just living expenses at home and away from home, it's very trying.
Anything helps, literally anything. Whatever we receive is going to her hospital bills that will be pilling up shortly. What is left after that will be donated to CHD research so we can find a cure or a preventive measure to make sure others don't have to go through this in the future.
Organizer
Abigail Levine
Organizer
Altoona, PA
