Hey all..
My wife and I had a baby girl back in August '04.. her name is Kacey and she has a website at Kacey's Website which is still under construction whenever I get free time. (Which as most of you parents out there know, isn't often!)
Anyway, Kacey was born with a congenital heart defect known as Ebstein's Anomaly. Basically, the valve which connects to the right ventricle was deformed (pushed down into the ventricle), making the "pumping area" of the ventricle extremely small. Also, the valve itself was deformed so it allowed for ALOT of leakiness back into the atrium where the blood comes from. The right ventricle is responsible for pumping blood to the lungs to get oxygen. In Kacey's case, since the ventricle was so small, and it leaked, she was only able to pump minimal blood to the lungs. So, in order to compensate for that, she was put on supplemental oxygen (which you will see in most of the pictures on her website).
In the next couple months, even on the supplemental oxygen, Kacey's oxygen saturations were falling. By March '05, they were in the high 60-low 70 percent range. (The normal human body has an oxygen saturation of 100%). So in March, Kacey underwent open heart surgery. The surgery they did was called a Modified Glenn's Shunt. Basically, they severed the vein which returns blood to the heart from the upper half of your body and re-routed it directly into the artery which goes to the lungs. They also did "some work" on her valve. The "some work" they did, isn't any kind of procedure other than the surgeon stitching things together to try to make it leak less. Anyway, the surgery went well and the weeks following it did have some scary moments. We were kept in the hospital longer than usual due to some "after surgery" issues which, for the most part, have been resolved. They say she may need a seconday surgery (Fontan Tunnel) when she is 2-4 years old, however, today, Kacey is doing great. She's only on one medication which she gets three times a day and will more than likely be on it for the rest of her life. It's a beta blocker which helps keep her from having rapid heart rates (220+) which is one of the complications we've experienced post surgery.
So, why am I telling you all of this. The only reason Kacey is alive today is due to the research done in the medical field which allowed the surgeons to perform the procedure they did. Alot of the funding which went into the research was provided by the American Heart Association (AHA). So, in a way to thank the AHA for helping my daughter live, my family has decided to take part in the HeartWalk 2005 down in Charleston, SC. The event is run by the Mid Atlantic Affiliate of the AHA and all proceeds go to helping research tomorrow's solutions for today's problems. Who knows, maybe in 5-10 years, they would be able to diagnose Kacey's condition in the womb and "fix" it before it's ever an issue.
If any of you are interested in helping the cause, I've set up this re-direct to Kacey's HeartWalk Page. Even if you, personally can't help, please forward this information on to anyone who you think might be interested in helping this cause.
This is a very personal matter to me and my family and we greatly appreciate anything anyone can do to help.
Thank you,
Darin Sorrentino
Aug 16 2005 9:00 PM UPDATE: I was just recently made aware that the website only will accept a donation of $25.00 or more. Apparently, if you would like to submit a donation for less than that or by check you can use this form. The form contains a phone number to contact if you need more information as well as the address to mail your donation in to.
Also, for those of you who are interested, Feb '05 and Mar '05 pics have been added to Kacey's Site. One word of caution, February was when Kacey had her surgery, so while the majority of the pictures for the month of March are spectacular because she no longer has an oxygen tube, there is one depicting her scar. The scar extends from the top of the rib cage to the bottom of it. As she grows, so will the scar. It will always extend from the top of the rib cage to the bottom, no matter how tall she grows.
Thank you!
My wife and I had a baby girl back in August '04.. her name is Kacey and she has a website at Kacey's Website which is still under construction whenever I get free time. (Which as most of you parents out there know, isn't often!)
Anyway, Kacey was born with a congenital heart defect known as Ebstein's Anomaly. Basically, the valve which connects to the right ventricle was deformed (pushed down into the ventricle), making the "pumping area" of the ventricle extremely small. Also, the valve itself was deformed so it allowed for ALOT of leakiness back into the atrium where the blood comes from. The right ventricle is responsible for pumping blood to the lungs to get oxygen. In Kacey's case, since the ventricle was so small, and it leaked, she was only able to pump minimal blood to the lungs. So, in order to compensate for that, she was put on supplemental oxygen (which you will see in most of the pictures on her website).
In the next couple months, even on the supplemental oxygen, Kacey's oxygen saturations were falling. By March '05, they were in the high 60-low 70 percent range. (The normal human body has an oxygen saturation of 100%). So in March, Kacey underwent open heart surgery. The surgery they did was called a Modified Glenn's Shunt. Basically, they severed the vein which returns blood to the heart from the upper half of your body and re-routed it directly into the artery which goes to the lungs. They also did "some work" on her valve. The "some work" they did, isn't any kind of procedure other than the surgeon stitching things together to try to make it leak less. Anyway, the surgery went well and the weeks following it did have some scary moments. We were kept in the hospital longer than usual due to some "after surgery" issues which, for the most part, have been resolved. They say she may need a seconday surgery (Fontan Tunnel) when she is 2-4 years old, however, today, Kacey is doing great. She's only on one medication which she gets three times a day and will more than likely be on it for the rest of her life. It's a beta blocker which helps keep her from having rapid heart rates (220+) which is one of the complications we've experienced post surgery.
So, why am I telling you all of this. The only reason Kacey is alive today is due to the research done in the medical field which allowed the surgeons to perform the procedure they did. Alot of the funding which went into the research was provided by the American Heart Association (AHA). So, in a way to thank the AHA for helping my daughter live, my family has decided to take part in the HeartWalk 2005 down in Charleston, SC. The event is run by the Mid Atlantic Affiliate of the AHA and all proceeds go to helping research tomorrow's solutions for today's problems. Who knows, maybe in 5-10 years, they would be able to diagnose Kacey's condition in the womb and "fix" it before it's ever an issue.
If any of you are interested in helping the cause, I've set up this re-direct to Kacey's HeartWalk Page. Even if you, personally can't help, please forward this information on to anyone who you think might be interested in helping this cause.
This is a very personal matter to me and my family and we greatly appreciate anything anyone can do to help.
Thank you,
Darin Sorrentino
Aug 16 2005 9:00 PM UPDATE: I was just recently made aware that the website only will accept a donation of $25.00 or more. Apparently, if you would like to submit a donation for less than that or by check you can use this form. The form contains a phone number to contact if you need more information as well as the address to mail your donation in to.
Also, for those of you who are interested, Feb '05 and Mar '05 pics have been added to Kacey's Site. One word of caution, February was when Kacey had her surgery, so while the majority of the pictures for the month of March are spectacular because she no longer has an oxygen tube, there is one depicting her scar. The scar extends from the top of the rib cage to the bottom of it. As she grows, so will the scar. It will always extend from the top of the rib cage to the bottom, no matter how tall she grows.
Thank you!
