My daughter, Kaelyn, was born in May 2004, and for the first week of her life, everything was perfect. That all changed when she was just 8 days old. All day, Kaelyn seemed very weak and after not eating anything for nine hours I knew deep inside that something was very wrong. We rushed Kaelyn to the Emergency Room and that night changed our lives forever. The doctor held up an x-ray of Kaelyn's chest. He said, "Here is the right side of Kaelyn's heart and here is where the left side should be." He went on to explain that they thought she had Hypoplastic Left Heart Syndrome.

Living in California, at the time, Kaelyn was air lifted to UCLA, where we were told we had three options. The first was to do nothing and let nature take its course - although to us, that wasn't even an option. Second was a heart transplant; but all the risks that go along with that choice made us a little uncomfortable. Our last option was a series of three open heart surgeries that would eventually reroute Kaelyn's blood flow to go directly to her lungs bypassing her single ventricle. The doctors were very helpful and they talked to us about how medicine is constantly evolving. So we opted for the three open heart surgeries hoping it will buy us years before Kaelyn could end up needing a transplant.

At 11 days old, Kaelyn underwent her first and most difficult open heart surgery. It is amazing to think of what the surgeons did that day, on a heart the size of a half dollar. Kaelyn had numerous complications after her Norwood surgery, some of which were Chylothorax, a paralyzed vocal cord and a paralyzed diaphragm; she spent two months in the hospital.

Kaelyn underwent her second open heart surgery at just 4 months old. She again dealt with complications; the Chylothorax returned and her paralyzed vocal cord caused major eating issues which we are still battling today. We also noticed she was a very “floppy” baby; but it took three years for a Cerebral Palsy diagnosis to explain this. The CP is something Kaelyn will always have, but leg braces and a lot of physical therapy have helped her come a long way and she started walking at three and a half. Kaelyn has severe left sided weakness, but we continue to pursue this in her therapy.

We were told the third open heart surgery is usually preformed when the patient is around 2 years old; unfortunately, for Kaelyn, things did not turned out as we would have hoped. Numerous complications and high pulmonary pressures prevented Kaelyn from having the third surgery as scheduled.

In the meanwhile, Kaelyn underwent numerous miscellaneous surgeries and was put on Viagra. This drug expands the blood vessels and increases blood flow allowing more oxygen to pass through Kaelyn’s body. In September '08, we received the good news that Kaelyn had become a candidate to receive the third open heart surgery; the Fontan. Along with everything Kaelyn went through, leading up to this, there is now a fenestration added to the Fontan procedure, which allows Kaelyn and other kids like her with high risk factors, the opportunity to receive the surgery.

Although, receiving this third open heart surgery is a step in the right direction, there are many other factors involved in securing Kaelyn’s future. We just received news from her last checkup that her single ventricle has lost some of its heart function; which as it gets worse will force us to consider a heart transplant unless other options are available.

For Kaelyn, living with a congenital heart defect is a day to day battle. In September '07, Kaelyn’s heart decided to throw us another curve ball. She started to experience episodes of extremely slow and erratic heart rate, which over a period of months became worse and worse. The doctor’s decided it was crucial to get Kaelyn into surgery as soon as possible, because during any one of these episodes, her heart could have just stopped. So in January 08, Kaelyn underwent her 13th surgery; this time to have a pacemaker placed. The surgery was successful and Kaelyn has responded well to the pacemaker.

In addition to everything going on, in December '08 Kaelyn was diagnosed with Scoliosis and as her body grows and matures, this will be something that will probably have to be corrected by surgery or a back brace.

Although Kaelyn currently sees many specialists, goes to physical and occupational therapy, gets supplemental feedings through her g-tube, has to wear her leg braces and tires out quickly, she is one of the happiest kids I know. And if you give her a few minutes, my little girl with only one vocal cord will chat your ear off. Kaelyn has showed us you don’t need a “whole” heart to be able to love whole heartily.

Feel free to visit her website at www.caringbridge.org/ca/kaelyn