Kaelyn was born in May 2004, and for the first week of her life, everything was perfect. That all changed when she was 8 days old. All day, Kaelyn seemed very weak and after not eating anything for nine hours we knew that something was very wrong. We rushed Kaelyn to the ER, 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 CA at the time, Kaelyn was air lifted to UCLA, where we were told we had three options. The first was to do nothing. Second was a transplant. Our last option was a series of three open heart surgeries that would reroute Kaelyn's blood flow to go directly to her lungs bypassing her single ventricle. We opted for the three open heart surgeries hoping it would buy us years before Kaelyn could end up requiring 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 yrs old. 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 yrs; unfortunately, for Kaelyn, things did not turn out as we would have hoped. Numerous complications and high pulmonary pressures prevented Kaelyn from having the third surgery as scheduled.
In the meantime, Kaelyn underwent numerous misc. surgeries and was put on Viagra. In Sep '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, there is now a fenistration added to the Fontan procedure, which allows Kaelyn and other kids like her, with high risk factors, the opportunity to receive the surgery.
Just when we thought life could become a bit normal for Kaelyn and even though the third open heart surgery was a success, in Jan '09 the Doctors noticed that her single ventricle was losing its function. This basically means that Kaelyn's heart is slowly failing. Needless to say this news has been devastating to our family, but we are not without hope. From here on out the Doctors will watch Kaelyn closely. When her quality of life and heart function is to a point where she can no longer live as she does now, it will leave us no option but to do a transplant.
For Kaelyn, living with a CHD is a day to day battle. In Sep '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 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 Jan '08, Kaelyn underwent surgery to have a pacemaker placed. The surgery was successful and Kaelyn has responded well to the pacemaker.
In addition to everything going on, in Dec '08 Kaelyn was diagnosed with Scoliosis and as her body grows and matures, this will be something that will have to be followed closely by a Doctor.
Although Kaelyn currently sees many specialists, goes to physical and occupational therapy, gets supplemental feedings through her g-tube and tires out quickly, she is one of the happiest kids I know. Kaelyn's favorite motto is a quote from her favorite movie, Meet the Robinson's; it is a perfect reflection of her spirit - "Keep moving forward!"
Submitted by Anonymous
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