Friday, October 20, 2006


Megan

Megan, our first child, was born on August 17, 2004. Immediately after birth every thing was just fine with Megan. We were told that she passed all of her tests and was a healthy baby. Our families got to spend some time with Megan, and then we had to move up to the nursery floor.

Once on the nursery floor, the nurses took Megan and said that they were going to get her warm and give her a bath. We were told that they would bring Megan back in an hour or two. When it was getting close to the two hour mark, we were just about to check on Megan. We never got the chance to do that. A doctor entered our room and told us that they noticed a heart murmur on Megan. He said that they wanted to take blood, do an EKG, a-chest x-ray, and run some tests to see what they thought could be wrong, if anything. While this made us nervous, we still were thinking that it would not amount to anything. We called our families just to let them know. Well, a few hours later, the first doctor came back, along with a few others, telling us that they believed that something was wrong with Megan's heart. Her oxygen level was low and they were concerned about that. They said that they spoke with the doctors at Children's Hospital in Pittsburgh, and that it was necessary to transport Megan by medical helicopter to the hospital.

This was the first piece of terrible news that we received over those next few days. We could not believe that our tiny little baby who was just a few hours old, was about to be taken away from us. We also could not believe how much danger she was in, and couldn't accept the fact that we could lose our brand new baby girl.

Once at Children's Hospital, we were told that Megan would have to undergo a cardiac catheterization to determine exactly what was wrong with her heart. She was also placed on constant oxygen, and eventually a ventilator. After going through the catheterization, at which she was only a little over 12 hours old, the doctors diagnosed Megan with the heart defect Pulmonary Atresia. This meant that Megan did not have a pulmonary valve, and that the entire lower right side of her heart was underdeveloped. In order for Megan to live, she would have to undergo open heart surgery.

Megan was just three days old when she had her surgery. She had so many tubes and medications hooked to her tiny body that it was hard to just see our baby. Gradually tubes and lines were removed, and Megan would be moved out of the Cardiac ICU and into the step down unit.

We faced our next piece of bad news, which was that Megan was not drinking enough to maintain her weight. She had to receive a feeding tube to assist in her eating. We spent almost the entire first month of Megan's life in the hospital before finally being able to bring her home. She had to come home with a feeding tube, which she had for a few weeks after discharge.

Once home, we faced another new challenge. As first time parents, we had all of the normal fears and concerns that all parents have. But, we also had new challenges to face, that most parents don't have to go through. Megan was on six medications when we brought her home. We had to make her formula a special way and we had to keep her from crying. We had to care for our baby not just as a newborn, but as a sick newborn.

Megan had to continually go to see the pediatrician as well as the cardiologist for checkups. They would monitor her weight gain as well as her heart function.

Just a few months ago, when Megan was eighteen months old, she underwent another cardiac catheterization. During this catheterization, they were able to close a shunt that they had placed during her first surgery, and we were told that the underdeveloped part of her heart had grown. This was wonderful news, because it meant that Megan wouldn't need more surgeries until she is older. When Megan was a newborn, we were told that she would need at least three surgeries to repair her heart by the time she was three. Currently, we are looking at not needing more surgeries until Megan is older, when she would need her Gortex valve replaced.

This journey has been filled with ups and downs, and still isn't over. It is our hope that more awareness will be place on Congenital Heart Defects in the near future. While pregnant with Megan, a heart defect wasn't ever a concern. We had our routine ultrasound and everything looked fine, although most ultrasounds do not show the chambers of the heart in detail. There is so much focus placed on other birth defects, but never on heart defects. We hope that by seeing just how many lives our affected by this that you will help to make our cause more known. If the detailed ultrasounds became the routine, and not just used when there is concern, then parents would at least be able to prepare themselves for the journey that follows a child with a congenital heart defect.

The past two years have been extremely challenging, yet so rewarding. Megan has brought so much love and joy to our lives, and we are so thankful that we have her with us today. We hope that by reading her story, along with the many others, it will open your mind to exploring the lives of children with Congenital Heart Defects. Thank you for taking the time to read our story.

Sincerely,

Jason & Beth

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