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In June of 2019, while at a routine 4 year well-check, Declan’s pediatrician heard what he thought was a heart murmur. Not being certain, he referred us to Pediatric Cardiology for an appointment just to make sure. It was at this appointment a few weeks later that we discovered Declan had a Bicuspid Aortic valve with moderate Stenosis and moderate insufficiency. Basically what that means is that instead of 3 leaflets on his valve, he was only born with 2. In addition there is narrowing of his valve and some leakage back into the ventricle each time it pumps. Our next step was going to Children’s Hospital of Wisconsin to get a second look. In July, we met with the cardiologists there and we were told Declan would eventually need a valve replacement but they would monitor his heart every 6 months to see how it progressed. Since that appointment last July, Declan showed no signs of having any heart problems. He enjoyed swimming, running around and acting like a typical energetic 4 year old.
On January 11, just a few months ago, while having fun with his best buddy, Ronan, we experienced a terrifying and unexpected incident where Declan became extremely disoriented, eventually turning pale and becoming unconscious. I quickly called 911 and during the time we waited for the ambulance, Matt and I noticed his lips turn purple, cold skin, and no response. Soon after the ambulance arrived, Declan started to wake up. We took him to the ER, where he got a full work-up, followed by a trip to his Cardiologist Monday morning. Matt and I were both convinced it was his heart valve that had to be the culprit. We were sure of it. After further testing, his Cardiologst came in with surprising news...it can’t be the valve, his disease hasn’t progressed enough to cause such a severe episode. Dr. Fedderly, his cardiologist, suggested Declan get a cardiac MRI to see if something else was going on with his heart. After the MRI a week later, we got a call from Dr. Fedderly with the results. Something in the MRI indicated there might be an issue with part of Declan’s left coronary artery. Next step was a 3-D echo and heart catheterization to look closer at his arteries. We went to Children’s on February 25th for the procedure. Going in we didn’t know what to expect...maybe there really wasn’t anything going on, I’m sure they’re just taking every precaution, right?
What the Cardiologist explained to us is that they believe they found Declan’s 3rd leaflet on his aortic valve. This is great news I thought. Until he explained that the leaflet was actually the possible reason that he had an occluded left coronary artery. With no blood flow going to his left coronary, Declan’s heart had developed “collateral” arteries to find a way to get blood to his heart. Basically, these “collaterals” have been keeping his heart pumping. It was explained that Declan would potentially need coronary artery bypass surgery, in addition to a valve replacement to fix the blood flow issue in his heart. We were told that this should be done in the near future to prevent the risk of a heart attack and possible damage to his heart muscle.
On March 5th, Declan underwent a CT angiogram, a final test before the surgeons would decide what he will need done. Today, we got final confirmation that Declan will have open heart surgery on Thursday, March 12th. It is not certain yet exactly what procedure will be necessary. We know he will be getting a valve replacement (called a Ross Procedure) where his healthy pulmonary valve is placed into the defective aortic valve, then the pulmonary is replaced by an animal valve. Bypass is still a consideration, depending on what his coronary artery looks like once he undergoes surgery.
Through all of this, we are amazed by Declan’s braveryHe has been through 3 sedated tests in the last 6 weeks and hasn’t lost his energetic spirit one bit. We are praying that this surgery will help him get back to doing all of the things a little boy loves to do. We are humbled and grateful for all of the prayers, support and love that we have received so far on Declan’s journey. We ask for you all to continue to pray as we go into next week’s surgery. We will continue to update as often as possible.