Family and friends are rallying in support of a child from Abilene who is battling a very serious heart condition and is now in need of a heart transplant.
Melissa Dawn tells KSAL News her granddaughter, Daija Mae Jo Kent, is currently at Children’s Mercy in Kansas City in the fight of her young life.
Daija was born at Salina Regional Health Center, and was mostly healthy aside from a heart murmur that doctors planned to monitor as she got older. Later, they learned she has a rare genetic duplication involving the 22q11 chromosome, which can cause heart defects, autism, and a variety of other medical challenges.
Despite those diagnoses, Daija was living her best life. She loved school, dance parties, Sesame Street, and making everyone around her smile. Daija lives in Abilene with her mother, Tatyana Jones, her grandmother (“Mimi”), Melissa Dawn. She attended Kennedy Elementary ,while also receiving ABA therapy for autism and participating in equine therapy.
Every year, Daija traveled to Wichita for routine heart checkups, and for the most part she remained healthy. Doctors had determined she had aortic stenosis and an extra membrane around one of her heart valves, but things seemed manageable for a long time.
About a year ago, they started noticing episodes where Daija would suddenly become pale and sweaty, her lips would turn blue, and she would pass out. Over time, these episodes became more frequent. Shortly after her 4th birthday, she went to see her cardiologist in Wichita. The doctor noticed significant changes and ordered more extensive testing at Children’s Mercy in Kansas City.
On May 6th, Daija underwent an echocardiogram, and doctors were attempt a balloon heart catheterization procedure to open the narrowed valve. On May 8th, during that procedure, Daija went into cardiac arrest and required CPR for 20 minutes. She was then placed on ECMO, a machine that temporarily does the work of the heart and lungs, and admitted to the CICU.
That was when they learned there were even more serious problems with her heart. During the procedure, doctors injected dye into her heart to get a clearer picture and discovered that Daija has an extremely small left coronary artery that was not supplying enough blood to the left ventricle. The testing also showed evidence that she had already suffered damage from a heart attack.
Doctors later attempted to remove her from ECMO, but a day later she coded again and had to be placed back on the machine. At that point, the medical team determined that they would not be able to surgically repair her heart. Daija would need a heart transplant.
On Thursday of this week Daija underwent open-heart surgery to place an LVAD (Left Ventricular Assist Device), which is a mechanical pump that helps support her heart. This device will allow doctors to begin waking her from sedation and help her regain some mobility while she waits for a transplant. She may need to remain on the LVAD for six months or longer until a donor heart becomes available.
During that time, Daija will have to remain in the hospital connected to the device. Her mother and grandmother will be staying in Kansas City at the Ronald McDonald House for the duration of her treatment, and neither will be able to work during this time. After her transplant, Daija will also need to remain in Kansas City for an additional 3–4 months for recovery and monitoring.
The family is incredibly grateful for the love, prayers, and support, but the financial strain is overwhelming.
A GoFundMe account has been established to help the family
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