Welcome to Caitlin's fundraising page in celebration of Ryleeann!
Thank you for visiting my fundraising page for the Congenital Heart Walk. Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to me.
Please help us to fund CHD research by making a donation to my personal fundraising page. Together we can make a life-saving difference!
Ryleeann was diagnosed with congenital heart defects (CHD) at 11 months old following a cardiology screen due to a family history of heart disease. At that time both a bicuspid aortic valve and an atrial septal defect (ASD) were detected.
For a little bit of background on heart anatomy:
*In a normal heart structure a tricuspid valve (or three leaflets) regulates blood flow from the heart into the aorta. In the case of a bicuspid valve, the valve may not close completely causing leaking and potentially ballooning of the aortic wall (aortic aneurysm).
*An ASD is a hole between the two upper chambers of the heart (atria). Some holes may be present at birth and can close over time (<8mm). Some holes may even go undetected. When the hole is larger in size it can cause an enlargement of one side of the heart and in increase in blood flow through the heart and into lungs.
*There are two ways to repair a sizable ASD:
1. Less invasive catheterization with a device placement.
2. Open heart surgical repair.
Thankfully her bicuspid valve continues to remain intact, but it will continue to need long term monitoring in the event it begins to leak. Her ASD measured quite large (20mm) and well beyond what could close on its own over time. A repair was inevitable.
At her pre-op appointment (April, 2019) routine tests, were completed, but the type of repair was still TBA. Her case was presented at a conference. An exploratory heart catheterization procedure combined with a transesophageal echocardiogram was scheduled.
After almost 3 hours into the procedure her medical team requested to speak with her family. What had appeared as a large single hole in her heart, because of the way the connective tissue presented on the echo imaging, were actually 3 holes with the largest measuring 20mm. A device placement would not be feasible. In addition, one side of her heart was quite enlarged because of the increase in blood flow, and moreover, her heart presented with restrictive cardiomyopathy, where the diastolic pressure in her ventricle was quite high. *Meaning her heart had a difficult time relaxing*
Open heart surgery was scheduled with more risks and more care than originally anticipated. The doctors were hopeful that the myopathy would fix itself once the ASDs were repaired, however in the event that she did have a true myopathy, meaning defects in the actual heart structure, a heart transplant was probable for the future.
Following the surgical repair (June 2019), where they left a small surgical fenestration, to alleviate pressures, she was discharged on 3 medications: 1 to help relax her heart, 1 to preserve kidney function, & 1 to maintain adequate sodium/potassium levels.
Her cardiologist was hopeful that the cardiomyopathy would resolve in time, but she was going to begin consulting with a physician at Nationwide Children’s who specialized in pediatric heart failure - specifically cardiomyopathy.
Forward to her most recent follow-up (July 2021): Rylee’s heart chambers are stable in size, her right ventricle is normal in size, and both ventricles have normal function. The atria remain stable with mild dilation. Blood continues to flow in the correct direction through the small surgical fenestration. And her oxygen levels continue to remain normal!! She is OFF all medications! She is functioning as a child without a heart defect and has started Kindergarten!!! ♥ WHAT A TRUE HEART WARRIOR
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