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Layla underwent surgery for cor triatriatum on May 29. The surgery was a success and she was discharged on June 2. In her own words, she is feeling "great".
Click on READ MY STORY for her entire story. Be sure to check out the updates in her journal, view the photo gallery, and drop us a line in the guestbook.
How it all began...in August 2006, Layla became very sick. Her pediatrician ordered chest x-rays and diagnosed her with pneumonia. She spent one night in the hospital. Followup x-rays showed that the pneumonia mass was gone but she continued to have "stipling" throughout her lungs. We were referred to a pediatric pulmonologist. He found the stipling to be odd, said that it didn't really look like "typical" asthma, but began treating her for asthma. He also performed a test in which he sent a scope down into her lungs to look for problems...he found nothing. Next she was tested for cystic fibrosis. Although test results are fairly instantaneous, we had to wait for her next appointment to obtain the results, which was torture. It gave us plenty of time to research the disease and find out how horrible it could be. We were very thankful a few weeks later when we found out that the test result was negative. At this point, everyone basically assumed that she just had asthma. We began giving her typical asthma treatments twice a day. She also took Singulair every day.
We went to her pulmonogist for regular exams. Each time, she would receive a series of chest x-rays. Each time, he would see the "stipling" throughout her lungs. About one year later, she got pneumonia again. This time, the emergency room physicians diagnosed the pneumonia. Later, her pulmonologist said that it was not likely pneomonia, but was more likely a severe asthma attack.
We were very frustrated. Most of the time, Layla was just like any other child. She exhibited no obvous symptoms on most days. However, when people around her got a cold or runny nose, it hit her harder and took her longer to recover. Also, when she ran for too long, she seemed to become fatigued and would tell us that she was having trouble catching her breath. We had been told that she had something wrong according to her x-ray, it didn't really look like asthma, but because we weren't sure what it was, we were going to treat it like asthma. We continued to worry that it was something else but at this point, there was nothing else to do. It seemed as if we had lived at the hospital for the past two years.
In 2008, Layla had a great year...no major illness, no pneumonia, and was rarely sick. However, during this time, she also became old enough to express herself verbally. She was able to tell us what she was feeling when she was sick, when she ran too much, etc. It seemed that she started getting fatigued much easier than before. Although she wasn't getting "sick", she was having more trouble breathing after any form of exercise or heavy play. As a result, her pulmonologist doubled her breathing treatment medicine. This was a bit scary for us. They felt that her asthma was not under control and that additional medicine was the only choice. At the same time, she never experienced typical "asthma attack" symptoms.
A few months later, late on a Friday, Layla had minor symptoms of an ear infection or a cold, I can't remember which. Instead of driving all the way to Chattanooga and trying to get an appointment with her pediatrician, we took her to our local family physician. We were shocked when he heard a heart murmur. He receommended that we follow-up with her pediatrician.
Eventually, we ended up at the pediatric cardiology department at T.C.Thompson's in Chattanooga. They did EKGs and x-rays, but it wasn't until they did the ECHO that everything was explained. The heart murmur was caused by a leaking mitral valve. However, that was not the only thing they found. She had a congenital heart condition (meaning that she has had this condition from birth) that consisted of a membrane running through her left atrium (upper left chamber). The membrane was basically dividing the chamber. Blood does flow through the membrane, but flow is restricted. The restriction causes back-pressure on the lungs and is often misdiagnosed as asthma. The condition is called cor triatriatum and is extremely rare.
In February, she had a heart catheterization. This procedure allowed doctors to measure the differential pressure across the chambers of her heart. Based on the result, Vanderbilt was contacted and it was determined that she needed open heart surgery to remove the membrane. Open heart surgery! The news brought a roller coaster of emotions. This is major surgery...this is my baby...tears, tears, more tears...she may not have asthma...she can be fixed...joy, thanks, praise! The journey on this roller coaster has just begun.